DWP new medical guidance on ME/CFS

The ME Association provide a copy of New DPW medical guidance on ME/CFS - essential informationn for anyone with ME/CFS or even Fibromyalgia who has to undergo DWP medical examinations in oreder to claim benefits.

Version 10 of this new medical guidance on ME/CFS, which will come into effect fairly shortly for the purpose of assisting DWP officials when assessing Disability Living Allowance (DLA) and Carer's Allowance applications, is now available in the 'Latest News' section of the MEA website.



DWP MEDICAL GUIDANCE – VERSION 10 (May 2007)

CHRONIC FATIGUE SYNDROME AND MYALGIC ENCEPHALOMYELITIS/ENCEPHALOPATHY

What is it? (Definition)

1. The term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability. A characteristic feature is fatigue/malaise that follows minimal exertion. People with CFS often describe the fatigue as being of a type and a scale beyond any other they have experienced. The illness may affect both physical and mental functioning, including cognitive function. Accompanying symptoms may include poor sleep, pain, poor concentration and memory, although this list is not exhaustive.

2. Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME) and post-viral fatigue syndrome. There is some difference of opinion over whether ME is different from CFS; however, most authorities refer to the condition as CFS/ME.

3. The symptom of fatigue is a feeling that can sometimes be difficult to describe and to measure. It is a feeling of exceptional or abnormal tiredness or lack of energy in excess of that anticipated in response to current activity. Fatigability in CFS/ME is the overwhelming feeling of exceptional tiredness exacerbated by exertion. CFS/ME is identified by its symptoms and disabling effects, and by excluding other medical conditions that could explain them. There are no confirmatory abnormal findings on physical examination, nor is there any specific investigation such as an abnormal blood test that is diagnostic. This does not mean that CFS/ME is not a real illness, and all medical authorities now accept the illness as being a severe and valid condition.

4. A consensus definition of CFS/ME has been agreed by international experts for the purposes of research and includes the following:-

A complaint of:

_ Persistent or relapsing fatigue for 6 months or more that is
_ Of new or definite onset
_ Not the result of ongoing exertion
_ Not substantially alleviated by rest
_ Results in a substantial reduction in previous levels of occupational, education, social or personal activities
_ Four or more of the following symptoms for 6 months or more
_ Impaired short term memory or concentration
_ Sore throat
_ Tender lymph nodes (neck or armpits)
_ Muscle pain
_ Pains in a number of joints (without arthritis)
_ New headache
_ Unrefreshing sleep
_ Malaise after exercise lasting more than 24 hours
_ Other physical causes of fatigue such as anaemia, thyroid disease, sleep apnoea, malignancy, liver disease etc. are excluded
_ Major mental health disorders are excluded, although as with other chronic conditions, people with CFS/ME may have conditions such as depression and generalised anxiety disorder occurring at the same time.

5. A number of other medical conditions such as fibromyalgia, irritable bowel disease, and migraine may also occur in people with CFS/ME. These have some symptoms in common with those described in CFS/ME.

How common is CFS/ME?

6. It is estimated that around 1 in 200 of the UK population have CFS/ME. It is predominantly a disease of young adults (commonest incidence between 25 to 50 years) and occurs in all socio-economic groups. It appears to be more common in women [female: male 2:1 or 3:2].

What is the cause?

7. A specific cause of CFS/ME has not as yet been identified. Possible causes of the condition have been the subject of much debate. It is likely that the term CFS/ME describes a spectrum of disorders in which physical and mental functioning are affected. In some cases infectious illnesses like glandular fever may trigger the onset of the condition. There is no evidence however that persistent infection is responsible for the continuation of the illness. Although the cause is not fully understood, changes associated with CFS/ME may include an altered stress hormone response, altered immune response, altered gene expression, sleep problems, alterations of mood, and coping strategies. Different factors are likely to be important in different people at different times.

What are the risks for developing and maintaining CFS/ME?

8. Although the cause of CFS/ME is unclear, certain factors may be important in its development. These are usefully divided into predisposing, triggering and maintaining factors. Some people may be predisposed to the condition, for example because of their genetic makeup, or gender. For example the condition is commoner in young women. An infectious disease such as glandular fever (infectious mononucleosis) or a major physical illness may trigger the condition. Other stressful life events or difficulties may precede development of CFS/ME, particularly if the stress is ongoing.. Finally some other factors may help to keep the illness going. For example, poor sleep, poor nutritional uptake, or a concurrent mood disorder.

Clinical features

9. The main symptoms are persistent mental and physical fatigue, tiredness or exhaustion that are characteristically made worse by activity. People often do not sleep well and find that sleep fails to refresh them. Often they feel symptoms more after physical or mental activity, even minor exertion within the home environment, and this effect is characteristically delayed until the next day or so, and is prolonged. Muscles and joints ache and are painful. Headaches, sore throat and tender lymph glands in the neck and armpits are described. People with the condition also report short-term memory loss and poor concentration. Their mood may fluctuate and they may be prone to feelings of anxiety. Hypersensitivity to everyday levels of noise and light are reported.

10. People with CFS/ME often describe variation in the level of symptoms and disability. Symptoms of fatigue and pain may vary in their severity during the course of the day, or may be considerably worse for several days after undertaking unaccustomed levels of physical or mental activities, even if these involve relatively simple tasks. Patients may be able to undertake a task for a short period of time, but then be unable to sustain or repeat it..

11. Those whose symptoms are mild may continue to undertake a range of normal daily activities. Some people will be able to carry out their occupation but have to reduce their social activities. Those with more severe forms of the condition are unlikely to be able to continue at work or in education. Daily living activities, hobbies, interests and social interaction are also likely to be considerably reduced. In the most severe cases the individual may spend almost all of the day resting, or be bed-ridden. Some people may use a wheelchair outside to minimise the fatigue and symptoms such as joint/muscle pain, or problems with dizziness/balance, engendered by walking.

12. Between a quarter and a half of people with CFS/ME are in part-time or full time employment or education. When compared to people with other diseases like diabetes mellitus or arthritis seen in hospital clinics many people with CFS/ME are on average more disabled.

13. Physical examination is normal in most cases. Some people may have postural hypotension. (Normally blood pressure is lower when sitting or lying in bed, on standing up it rises. In some people, in particular the elderly, there is a lag phase - a time interval - during which the pressure rises to the higher level. This may be experienced as a sensation of dizziness or light headedness, and sometimes in the elderly leads to falls). Those who are the most chronically and severely disabled may have some observable generalised muscle wasting, most likely to be found in the lower limbs, although this is unusual.

Is CFS/ME a physical illness?

14. There has previously been much debate as to whether CFS/ME is a physical illness or not. Some researchers have put forward the argument that it is a purely psychological disorder, citing in evidence the high rate of co-morbid depression. Others are equally sure that it is purely physical, citing the abnormal hormonal tests found in some or the triggering of the illness by certain infections. Both views are oversimplifications. The reality is that the disability of CFS/ME involves both physical and mental incapacity and it is important to ensure full consideration is given to all the disabling effects of the illness and an accurate assessment of care and mobility needs is made."

15.For the purpose of DLA, however, the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered "physical". For this purpose, CFS/ME is "physical".

Management

16. Several different approaches have been used to manage this condition. There is no cure and treatment is aimed at managing the effects of the illness to improve both physical and mental function. No one approach is effective in all cases.

17. Management starts with the diagnosis and an explanation of why a patient is still ill. An explanation that CFS/ME may be progressive in some patients, but is not life threatening is an important initial step. No specific drug treatments are available. A collaborative and concordant approach to managing the condition is used where doctor and patient discuss the different options with a view to reducing symptoms and disability. The aim of management is to enable the person to improve their quality of life by returning in a gradual way to usual daily activities, education or work. It is helpful to address both the physical and mental effects of the illness, and to minimise the results of over exertion or prolonged inactivity, and revise a "boom and bust" pattern of activity. A variety of forms of management as described below may be tried, either individually or in combination. All involve establishing a sustainable baseline of activity as the first step.

Graded exercise therapy and graded activity therapy

18. Supervised and gradually increasing physical and cognitive activity will enable the majority of people to improve, and some to return to a normal level of functioning. This is likely to be undertaken with the help of an appropriately trained physiotherapist (using graded exercise therapy) or an occupational therapist (using life style management) often within a hospital or clinic setting. Caution is required since over-activity, or increasing at too fast a rate, may lead to relapses. Unsupervised or inappropriately supervised therapy can sometimes also cause relapses. Research suggests that this approach is helpful in the majority of adult ambulant patients.

Cognitive behavioural therapy

19. Cognitive behaviour therapy (CBT) is used in CFS/ME to help people to examine their interpretation of symptoms such as fatigue or muscle pain, which they may perceive as damaging to their bodies, and as a result avoid activities that appear to precipitate them. People are encouraged to view such symptoms as reversible physical and psychological processes rather than evidence of a fixed or progressive disease process, by trying out a mutually agreed programme of graded activities, which help to challenge these beliefs. Understanding the illness, addressing fears and where appropriate reinterpreting the disabling symptoms allows the person to make a gradual improvement in their level of functioning and well being. Sleep is improved and mutually agreed graded increases in activity become possible over some weeks or months. Research suggests that this approach is helpful in the majority of adult and adolescent outpatients.

Pacing

20. Pacing is a lifestyle management approach in which the person with CFS/ME is encouraged to live within the limits of their illness and energy levels carefully balancing their activity and rest, as well as balancing different activities. When possible, activity is increased gradually, but readjusted in the event of symptom exacerbation. Patient group feedback is favourable and a research study is underway to look a the efficiency of the treatment.

Medication

21. Antidepressants may be very helpful in treatment of co-morbid conditions such as depression or insomnia. They can elevate mood or relieve anxiety in standard doses (eg. sertraline, citalopram) or improve sleep and relieve pain in low doses (e.g. amitriptyline, trimipramine). However, antidepressants can have side effects when used at the standard dose required to treat depression; and these sides effects may need to be taken into account. Simple analgesics and non steroidal anti-inflammatory drugs are also used to alleviate persistent pain.

Course of illness and prognosis

22. People with mild illness may recover spontaneously, or with some general advice or a limited treatment programme over the course of the following six months. These people are likely to be treated in a general practice setting.

23. People with established CFS/ME of moderate severity lasting one to two years or more are likely to need a more extensive management programme, as described above, lasting 6 to 12 months or more. Most people who are able to attend hospital for treatment are likely to make a significant improvement with appropriate management.. Some people will recover fully, but others will not achieve their previous level of functioning. Some may not improve. Those who recover may be at risk of recurrence. Those who improve are at risk of relapse. In many patients, disability and quality of life can be improved, sometimes to a significant extent..

24. Severe cases are less likely to recover completely or benefit substantially from a management programme.

25. Indicators of a good prognosis

_ Male sex
_ A definite history of an acute viral illness like glandular fever at the onset
_ Mild disability and few symptoms
_ Clinical features showing a pattern of evolution towards functional recovery
_ Early diagnosis aimed at eliminating associated physical disorders and/or identifying psychiatric illness, along with other complicating psychological or social factors
_ A management approach which may encompass physical, psychological and social elements that allows a stepwise approach to functional improvement, using rehabilitation

26. Indicators of a poor prognosis

_ Onset of symptoms without any clear precipitating factor
_ Clinical features characterised by severe and unremitting symptoms
_ Severe and persistent disability
_ A management approach that overemphasises the importance of either complete rest or which advocates a rapid return to pre-illness levels of physical activity.
_ Those with comorbid significant medical conditions or mood disorders
_ A complex background of adverse psychological and social factors

Functional restrictions

27. The disabling effects of CFS/ME in individuals is variable (see para 9). The following describes the typical problems a with daily living activities for the majority of the time.

28. Mild condition

The person would normally to be able to wash, dress, bathe, use the toilet, get up and downstairs without difficulty. The ability to plan a meal is not impaired and the tasks involving in preparing and cooking food are unlikely to be restricted in any way. The ability to walk long distances may be reduced, but the person is likely to be able to walk short distances on an unrestricted basis most of the time. Their judgment, thought processes and means of communicating are not affected to the extent that they would be unable to find their way around in familiar and unfamiliar places.

29. Moderate condition

Those with a moderate level of disability would be expected to be able to manage some personal care and preparation of food without help from another most of the time. Tasks may take longer than normal and may need to be followed by a period of rest. Although the level of fatigue and symptom severity may vary during the day or from day to day, the ability to maintain personal hygiene and nutrition is likely to be unimpaired. The ability to walk more than 100 metres consistently may be restricted in moderate cases, but severe restriction of walking is unlikely.

30. Severe condition

People with a severe level of disability, who spend most of the day in bed or otherwise immobile, and who may have clinically evident muscle wasting, may well need help with personal care and preparing food. Such claimants may be severely restricted in their ability to walk. There may a requirement for supervision either at home or out of doors as a result of significant cognitive impairment, but it would be uncommon.

ENDS

Fibromyalgia Overview, Signs, Symptoms & Treatment

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. Fibromyalgia is more common in women than in men. Previously, fibromyalgia was known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias.

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day...


Widespread pain.

Fatigue and sleep disturbances.

People with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep. Some studies suggest that this sleep problem is the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. So people with fibromyalgia miss the deep restorative stage of sleep. Nighttime muscle spasms in your legs and restless legs syndrome also may be associated with fibromyalgia.

Irritable bowel syndrome (IBS).

The constipation, diarrhea, abdominal pain and bloating associated with IBS are common in people with fibromyalgia.

Headaches and facial pain. Many people who have fibromyalgia also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders.

Depression
Numbness or tingling sensations in the hands and feet (paresthesia)
Difficulty concentrating
Mood changes
Chest pain
Dry eyes, skin and mouth
Painful menstrual periods
Dizziness
Anxiety ..

See your doctor if you experience general aching or widespread pain that lasts several months and is accompanied by fatigue. Many of the symptoms of fibromyalgia mimic those of other diseases, such as low thyroid hormone production (hypothyroidism), polymyalgia rheumatica, neuropathies, lupus, multiple sclerosis and rheumatoid arthritis. Your doctor can help determine if one of these other conditions may be causing your symptoms.

Treatment
In general, treatment for fibromyalgia includes both medication and self-care. The emphasis is on minimizing symptoms and improving general health.

Self-care
Self-care is critical in the management of fibromyalgia.

Reduce stress.

Get enough sleep.

Exercise regularly.

Pace yourself.

Maintain a healthy lifestyle.

Does exercisehave negative effect on CFS sufferers?

Researchers document debilitating effect of exercise in CFS
After exercise at maximum exertion, CFS patients were slower on all measures of cognitive reaction time and scored lower on cardiopulmonary capacity measures than sedentary control subjects.

Research carried out to "compare the metabolic responses and neurocognitive consequences of a maximal exercise challenge between CFS and control subjects."

Concludes "These results indicate that exercise performance and neurocognitive abnormalities exist in CFS. The lack of any significant differences in lactate, glucose or nasal rhinometry precludes clear explanation for these differences."

Types of Lactose Intolerance

eMedicine - Lactose Intolerance : Article by Praveen K Roy, MD

"Lactase deficiency may be classified as primary, secondary, congenital, and developmental. The classification is important as it relates to diagnosis, prognosis, and treatment...

Lactose intolerance occurs in about 25% of people in Europe; 50-80% of people of Hispanic origin, people from south India, black people, and Ashkenazi Jews; and almost 100% of people in Asia and American Indians.1 Lactose is a disaccharide sugar that is found exclusively in mammalian milk and is digested by the enzyme lactase in the mucosal brush border of the intestine. Reduced intestinal lactase results in malabsorption of lactose. The unabsorbed lactose is metabolised by colonic bacteria to produce gas and short chain fatty acids, causing the clinical syndrome of abdominal cramps, bloating, diarrhoea, and flatulence."

As iI apparently have suffered with dairy intolerance since being born I guess I must have Congenital lactose intolerance

Causes:

Congenital lactose intolerance is inherited as an autosomal recessive trait and is very rare.

Primary lactose intolerance is due to low levels of lactase, which develop after childhood
.
Secondary, or acquired, lactase deficiency may develop in a person with a healthy small intestine during episodes of acute illness. This occurs because of mucosal damage or from medications. Some causes of secondary lactase deficiency are as follows:
Acute gastroenteritis
Giardiasis
Ascariasis
Crohn disease
Celiac sprue
Tropical sprue
Radiation enteritis
Diabetic gastropathy
Carcinoid syndrome
Whipple syndrome
HIV enteropathy
Kwashiorkor
Chemotherapy
Gastrinoma

Fibromyalgia myths dispelled...

Fibromyalgia Myth Busting

One to show your GP if they bellieve any of the following about fibro....click link for full article...

by Karen Lee Richards
ImmuneSupport.com

For many years Fibromyalgia has been considered something of a mystery, confounding the doctors who are trying to treat it and the patients who have to live with it. Only recently has new technology begun to unravel the truths about this mysterious disorder. As a result of the previous lack of scientific evidence, several myths about Fibromyalgia have developed that, unfortunately, are still being repeated today. It’s time to dispel the myths and clarify the facts.

Myth 1: Fibromyalgia is a form of arthritis.
Fact: Fibromyalgia is a neurologic disease.

the FM research front, new brain-imaging techniques and scientific studies are revealing that Fibromyalgia is better defined as a central nervous system disorder that results in abnormal pain processing.

Myth 2: Fibromyalgia affects the muscles, joints and connective tissue.
Fact: There is no damage to the muscles, joints or connective tissue of people with Fibromyalgia.

Myth 3: Fibromyalgia is an autoimmune disease.
Fact: Fibromyalgia is NOT an autoimmune disease.


Myth 4: Fibromyalgia is a middle-aged woman’s disease.
Fact: Fibromyalgia affects men, women and children.

Myth 5: Fibromyalgia is a psychological problem.
Fact: Fibromyalgia is a physical disorder with real, measurable biological abnormalities

Chronic Fatigue Syndrome recorded as a cause of death

drjohngreensmith@mefreeforall.org

Letters to the editor - Sydney Morning Herald.

The "indisputable evidence of inflammation and cell death" observed under the
microscope, in the case of Sophia Mirza, reported to be the first person in
Britain to have had Chronic Fatigue Syndrome officially recorded as a cause of
death (Victims give clues to the answers, Sydney Morning Herald, 12 April
2007), restores Myalgic Encephalomyelitis to its rightful diagnostic place.

There never was a good reason for CFS to displace M.E. Whatever M.E. is, it
certainly isn't fatigue.

Nor was there ever a good reason for M.E to be considered the province of
psychiatrists. There is no evidence of greater incidence of psychiatric
history amongst M.E. sufferers than in the general population and, while
people with M.E. may have understandable concomitant psychological problems,
the one is not a prerequisite for the other.

M.E. sufferers and researchers have been clamouring for decades that CFS has
been holding back research and that, if you don't look for, you're not going
to find the neurological evidence, it was Myalgic Encephalomyelitis all along.
Then we can get down to the business of seeking treatments towards a cure.

You don't have to be much of a specialist of any sort to reckon that it would
be better for all concerned to spend money on neurological testing while M.E.
sufferers are still alive.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org

Article

The development of an autopsy protocol may help unlock some of the mysteries of chronic fatigue syndrome, writes Julie Robotham.

UNDER the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death...

Fibromyalgia, frozen shoulder and osteopathic treatment

A regional CFS/FMS/MCS group notes that they have seen a couple of incidents of frozen shoulder syndrome in Fibromyalgia patients and recommend this non-invasive, non-surgical osteopathic treatment as developed by English osteopath, Dr. Simeon Niel-Asher

Link frozen shoulder syndrome in Fibromyalgia

Fibromyalgia sufferers should all link to this video

Link Living with Fibromyalgia on You Tube

Few videos mark the stark and devastating nature of Fibromyalgia as this
personal account of living with fibromyalgia that has just been posted on you tube.

Please do watch, comment and link to this to help raise awareness of FM and the effects on all aspects of life if you can.

This young woman's daily struggle vividly illustrates the awful isolation and lack of understanding that still surrounds Fibromyalgia, ME/CFS.

Her story is incredibly moving and courageous - I just wish I could put words together as eloquently as she does- words often seem to evaporate and I am left tongue tied, a major frustration for me.

Link Living with Fibromyalgia on You Tube

The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment

Great article for clarifying how Fibro disrupts in often unpredictable ways..

The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment: "I usually state that Fibromyalgia is a condition that may unpredictably flare up from time to time, resulting in impairment of work ability, and may require a time off work on a temporary basis. I describe the health services needed, such as medications, therapies, or injections, and explain the justifications for a leave from work....

Examples of work restrictions specific to a patient with FM include:

Not working more than eight hours a day five days a week. Specifically, no overtime or weekends.

Working part-time hours, working day hours only, or working flexible hours.

Avoiding temperature changes (no exposure to cold or damp weather).

No direct air-conditioning drafts.

No repetitive reaching or overhead use of the arms.

No repetitive bending or leaning forward.

No sitting, standing, or walking for a long period to time without altering positions."

i seem to be having a minor flare up at the moment, feel fluey and hot, achy , v tired with mush for brains... I am half hoping that it is because a period is on its way...sore boobs would suggest that...rather than my new work under permitted hours ruling. The latter would be a reall knock back...

Fibromyalgia update

Been a while ssince I posted but this article makes some excellent points. I am in the middle of a flare right now with almost daily migraines and high levels of ibs symptoms and just so, so tired...

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.To: All My M.E. Chums, ME Free For All.org volunteers & Online Groups.(If anyone is troubled by duplicates or prefers not to receive e-mails of this sort, please let me know and I'll remove you from the list immediately)Following the exceptional interest in this article, I received requests from at least one member of every M.E. on line group + others for a text version.I'm grateful to Stephen Ralph who defied sleep for as long as he could last night to produce the Lion's share of this work and I tidied it up this morning.I hope it will stimulate more people to respond with whatever their opinion since, I am sure, it increases the chance of at least one or two of us getting published.

The e-mail address is letters@mailonssunday.co.uk

CheersJohndrjohngreensmith@mefreeforall.org

Health Notes On your behalf Health Editor Sarah Stacey asks the experts for answers to your health queries

Q. My daughter, 33, has been diagnosed with ME (myalgic encephalomyelitis) but the doctors seem to be treating her as if the illness isn't physical but all in her mind. She's not getting better. Is there another approach?

A. There has been a fierce argument about the nature of this debilitating condition for several decades. Some psychiatrists claim it's a psychosomatic condition where patients imagine they have an illness but increasing numbers of scientists worldwide state that it's a genuine physical (or organic) condition. The situation was reviewed in a recent parliamentary inquiry, chaired by Dr Ian Gibson MP, which backed the latter; see the full report on www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf.'

ME is a chronic inflammatory condition, involving the spinal column and nerves in the brain. It is a multi-system, multi-organ illness affecting the brain, hormones and immune system,' says Malcolm Hooper, Emeritus Professor of medicinal chemistry at the University of Sunderland. It can often be traced back a viral or bacterial infection, or even an immunisation, explains consultant physician Dr William Weir: 'Any infection switches on genes in the immune system fight back. But research suggests that in ME patients these genes aren't switched off once the offending organism is cleared, so the immune system is stuck in a state of red alert. Many patients say they feel as if they have flu all the time.' Toxic chemicals, such as organophosphate pesticides (used in head-lice shampoos), may trigger the illness, too.The reasons the psychiatric lobby have claimed the condition for their own are that patients are often depressed and tests show physical change.

Although virtually every disease has a psychological element, says the Gibson inquiry, 'it is likely the inactivity and lethargy caused by the ME combined with psychological aspects such ... social stigma, lack of classification or possibility of a cure, leave the ME sufferer ... more prone to depression.'Dr Weir explains that, `while inflammation is easy to spot in other inflammatory conditions, with ME it seems very subtle and diffuse.' The situation is complicated by the fact that chronic fatigue, one of the main symptoms, can be due to other illnesses, including underactive thyroid, as well as more serious problems, so excluding those is vital. The Gibson inquiry suggests adopting the criteria for diagnosing ME developed by Dr Bruce Carruthers's team (see the Gibson inquiry, as before, pages 15-17).

Sadly, the £11 million NHS budget has, to date, gone into centres where ME is treated as a psychiatric condition with cognitive behavioural therapy (which has helpful but transient effects in some patients), graded exercise therapy (which some experts say is positively damaging) and pacing, a method of managing energy (which is common sense).

More research is vtal but the Gibson inquiry emphasises the need for a `holistic, mind and body approach'.

Expert advice includes:
a.. Eat well with omega-3 rich oily fish and fresh vegetables and fruit Excluding red meat may help.
b.. Patients with IBS-type symptoms may benefit from pinpointing trigger foods through elimination diet. (See The Complete Guide to Food Allergy and intolerance by Professor Jonathan Brostoff and Linda Gamlin, Bloomsbury, £6.99.)

c.. Anti-inflammatories and painkillers may relieve joint and muscle aches. Drug therapies so far are 'uniformly disappointing', says the Gibson inquiry, but antiviral agents and interferons may prove helpful.

d.. Meditation aids relaxation.

e.. Acupuncture, reflexology and aromatherapy may relieve symptoms.

f.. Try gentle yoga (search Google for local classes).

g.. Follow short spurts of activity with rest.

h.. High levels of EPA (eicosapentaenoic) omega-3 fatty acids have benefited some sufferers. (See Chronic Fatigue Syndrome: a natural way treat ME by Professor Basant K Puri, Hammersmith Press, £14.99.)

Books mentioned are available from you-bookshop.co.uk; post-free, tel: 0870 162 5006LIFESUPPORTOr rather, not ...

ME is currently defined a psychosocial by the Department for Work and Pensions (DWP) and medical insurance companies - despite its World Health classification neurological disease - so patients are not entitled to the higher level of benefit payments. This is 'in the financial interest of both the DWP and the medical insurance companies' rather than the sick person, says the Gibson inquiry and these patients should be entitled to the higher rate.

E-mail Sarah at s.stacey@you.co.ukSarah reads all your e-mails but regrets that she cannot answer them all personally

Helpful websites

a.. Investinme.org - an independent charity campaigning for more biomedical research into ME, with excellent information for patients and carers.

b.. Professor Hooper's lecture, Engaging with ME, is available through
satori-5.co.uk/1_severe_me/prof_hooper_dvd.html

Thanks to our expertsProfessor Malcolm Hooper;Dr William Weir, tel: 020 7467 8478;Professor Jonathan Brostoff. tel: 020 7435 7106YOU 14 JANUARY 200763 ---------------------------------------------

Digestive enzyme for Lactose Intolerance

This stuff looks the biz! could be v v useful for when I want to eat in a restaurant etc...anything that may be not 100% non dairy......

foodreactions.org: Digestive enzyme for Lactose Intolerance: "Prolactazyme Forte Capsules
Designed specifically for the complete digestion of milk and its products. Ideal to persons suffering from LI and/or milk allergies. It helps to eliminate all symptoms associated with Lactose intolerance, such as cramps, bloating, flatulence etc. "

Healthy Lifestyle Changes for Fibromyalgia: Diet (Excerpt from �The Complete Idiot�s Guide to Fibromyalgia� by Lynne Matallana)

Interesting to read that lactase enzymes can be bought to help with dairy intolerance which I certainly suffer from...

Healthy Lifestyle Changes for Fibromyalgia: Diet (Excerpt from �The Complete Idiot�s Guide to Fibromyalgia� by Lynne Matallana): "Lactose intolerance is the inability to digest lactose, the principal sugar of milk. This intolerance is caused by a shortage of the enzyme lactase, which is produced by the cells that line the small intestine. When there is not enough lactase to digest the amount of lactose consumed, a person may suffer from nausea, cramps, bloating, gas, and diarrhea. Individuals with lactose intolerance need to limit their intake of milk and dairy products or take lactase enzymes that are available without a prescription. "

Will research to see what if such lactase enzymes are available in the UK......

Robitussin - Dextromethorphan for Fibromyalgia

Wyeth UK - Robitussin: Robitussin Dry Cough Medicine - nb only this one type contains the "Active ingredient:Dextromethorphan hydrobromide."

Erowid DXM Vault : Complete Guide to DXM in Non-Prescription Drugs: " list of more than 80 non-prescription medications containing various forms of DXM. Listed are the active ingredients (as of 2001) and any relevant notes or cautions"

The highest pure dosage is "DexAlone
by DexAlone
Active Ingredients (per gelcap):
DXM Hydrobromide (30mg)
Notes: Manufactured by DexGen"

DexGen Pharmaceuticals, Inc. Interesting site esp as it mentions P Holfords bug bear - homocysteine....






"

Old Remedy/New Help for Fibromyalgia

The cough medicine rumour revived......ABC30.com: Health Watch - Old Remedy/New Help for Fibromyalgia: "Fibromyalgia affects one in nine people and leaves its victims in constant pain. It's difficult to diagnose, and there is no cure. But there is hope. An ingredient found in a common over-the-counter drug may ease patients' pain.....A new twist on an old drug may help. Dextromethorphan is an ingredient commonly found in cough syrup, but doctors found it also targets nerve cells.

Dr. Staud says, "The activity of these nerve cells is significantly decreased, resulting in less amplification of pain."

He says, however, the levels found in cough syrup are not strong enough....

"about four to five-times stronger than what you can buy over-the-counter.......

At high doses, dextromethorphan causes problems related to memory and confusion. The drug is still being studied and isn't available to the public yet."
so now to find out which brands of cough medicine contain the active ingreditnt.....

IBS and Chronic Fatigue

CO-CURE Archives -- September 2006, week 5 (#17)

Very interesting especially as irritable bowel is one of my most longstanding problems - improved by dairy free diet and after a course of mega antibiotics (metronidazole I think) plus another stomach ulcer drug whose name eludes me ...to treat my gut which was inflamed mouth to bottom.....

"The relationship established between irritable
bowel and the serum IgA to enterobacteria suggests that
irritable bowel in CFS reflects in part disorders in gut-intestinal
permeability rather than psychological stress as most
psychiatrists tend to confirm.


Interestingly, the intestinal barrier may be compromised by
factors which are known to trigger CFS, e.g. psychological
stress (Meddings and Swain, 2000); sustained strenuous
exercise (Davis et al., 2005); food allergies (Andre et al., 1987),
surgery and trauma (Pape et al., 1994), but also inflammation.....

...The results show that enterobacteria are involved in the etiology of CFS
and that an increased gutintestinal permeability has caused an immune
response to the LPS of gram-negative enterobacteria. It is suggested that
all patients with CFS should be checked by means of the IgA panel used in
the present study and accordingly should be treated for increased gut
permeability.

Keywords: Chronic fatigue syndrome; Inflammation; Immunity; Autoimmune;
IgA; Enterobacteria; Gut permeability; Oxidative stress; Leaky gut"

Evidence to the Gibson Inquiry

Essential reading for anyone living with any form of CFS, ME etc including carers, relatives and especially Doctors...

Evidence to the Gibson Inquiry: "The ME Association has set up this blog so that people can read evidence given to the Gibson Inquiry on the state of ME research in the UK. We shall be adding to it as more evidence is made available. Members of the Inquiry have announced that they plan to complete their Report by the end of October 2006."

Chronic Fatigue myths debunked

Excellent summary of the many misconceptions surrounding CFS with references to research and articles.

ME Awareness Week pembrokeshiretv.com

pembrokeshiretv.com - News, Sport, Information and Entertainment: "ME Awareness Week began yesterday. "

How very apt as today I am very aware of just how knackered I still am - mum came to visit and I made spanish omelette and salad plus we went to the garden center for a bag of multi purpose compost and some composting stuff to speed up my new compster...and I am absolutly bushed, banging headache and struggling to hold a sensible conversation as at least half the words I want elude me - when I can put together a cohenrent thought or two...

One interesting point iss this re W.H.O that ME is now officially a neurological illness... " This tiredness is very different from normal tiredness. Normal tiredness is relieved by rest, but tiredness felt by ME sufferers is not. It is incredibly debilitating.

“Simple mental or physical tasks can leave ME sufferers feeling shattered or struggling to function. The simplest everyday tasks that used to be easy are very difficult, even impossible.”

The illness is recognised by the UK government but there is currently no government funded research into it. It is classified as a neurological illness by the World Health Organisation."

I am still pissed with myself for not just giving the neurologist my prepared description of my symptoms with a rough chronology and letting him dominate and intimidate me a little so I did not stress my full range of symptoms especially the tiredness and pain....not that there is much that can be done....off for a rest and to contemplate tackling getting the composter into place...

Cognitive Impairment - Chronic Fatigue Syndrome

psychosocial model versus evidence of measurable biomedical anomalies in (ME)CFS Cognitive Impairment is it not time for an integrated approach? I for one am aware that both models have some beneficial aspects and the 2 - psychosocial and biomedical interact within each individual.....

Am still very unsure about my consultation with the neurologistas he started quite aggresively anyway lets see if the scan shows anything

Research: Green Tea's Protective Role in Autoimmune Disease - Chronic Fatigue Syndrome & Fibromyalgia Related News

Could green tea help my fibromyalgia symptoms?

Research: Green Tea's Protective Role in Autoimmune Disease - Chronic Fatigue Syndrome & Fibromyalgia Related News: "Green tea seems to help protect the body from autoimmune disorders, according to a Medical College of Georgia oral biologist. Dr. Stephen Hsu, a researcher in the MCG School of Dentistry, has amassed a large bank of research helping document green tea's health benefits in everything from oral cancer to wrinkles."

His recent findings concern "autoimmune diseases. These diseases, such as type 1 diabetes, rheumatoid arthritis, lupus and Sjogren's disease, inexplicably prime the body's immune system to attack its own tissues, with often disabling and even life-threatening consequences"

Fibromyalgia Sucks Ass - tribe.net

Just found this....and joined...Fibromyalgia Sucks Ass - tribe.net: "Fibromyalgia Sucks Ass tribe!

For men and women with Fibromyalgia and related conditions and symptoms"

Epstein-Barr Virus May Trigger multiple sclerosis

Count down to my appointment with the neurologist begins in earnest now....just 13 days to go. I am still concerned that I may have multiple sclerosis - my symptoms certainly fit the relapsing remitting type but I have to hope that a diagnosis will lead to improved treatment..

Epstein-Barr Virus May Trigger MS: "Young adults with high levels of antibodies to Epstein-Barr virus appear to be at increased risk for developing multiple sclerosis later in life, new research suggests.

The findings add to the evidence implicating the common virus as a possible trigger for multiple sclerosis, a neurological disease of the central nervous system (brain, spinal cord, and optic nerves)...Researchers have searched for decades for a viral or bacterial agent that may trigger multiple sclerosis in people who are genetically susceptible. Epidemiology professor Alberto Ascherio, MD, and colleagues from the Harvard School of Public Health in Boston have published several studies suggesting that Epstein-Barr virus may be that agent.

"Collectively, the results of this and the previous studies provide compelling evidence that infection with EBV is a risk factor in the development of MS...

it is widely accepted that environmental factors, specifically infections, trigger MS in people who are genetically vulnerable to the disease. But he adds that it is more likely that multiple triggers come into play.

"When we finally understand everything about MS, it may not be a single virus or other infectious agent that is the trigger," he says. "It may well be that different agents act as triggers in different people."

He notes that people with MS tend to generate higher immune responses to many different viruses, including those that cause mumps, German measles, and herpes...

SOURCES: DeLorenze, G.N., Archives of Neurology, April 10, 2006, vol 63: online edition. Alberto Ascherio, MD, DrPH, associate professor of nutrition and epidemiology, Harvard School of Public Health, Boston. John Richert, MD, vice president of research and clinical programs, National Multiple Sclerosis Society. National Multiple Sclerosis Society website: "Just the Facts: 2005-2006."
"

Researchers Bring Hope to Fibromyalgia Syndrome

I am still very very pleased with result I have from Allegron ( Nortriptyline) - finally I sleep without waking 3,4,5 or more times every hour, my pain and aches are much diminished and so are all other symptoms like brain fog, vision problems, migraines etc but I still feel soo tired most of the time...suppose 6 months of feeling a bit better is still maybe too short to hope for a complete recovery...anyway it sounds likee this drug has similar effects for som fibro patients...

Dream Catchers: Researchers Bring Hope to Fibromyalgia Syndrome: "For 12 years Bebette Rubio considered herself lucky if she got two full hours of sleep a night. The 40-year-old mother of three suffers from fibromyalgia syndrome, a common clinical condition marked by widespread body pain, a form of body tenderness, fatigue, morning stiffness and disrupted sleep. Fibromyalgia affects 1 in 50 Americans, mostly women...

Jon Russell, M.D., Ph.D., associate professor of medicine at the Health Science Center, who had just completed a clinical study of a drug called sodium oxybate.

"No medication is currently approved by the U.S. Food and Drug Administration for the treatment of fibromyalgia syndrome; physicians treat the disorder with medications officially approved for other purposes," said Dr. Russell, who is the study’s lead researcher. "This study clearly demonstrated that sodium oxybate is a novel option of therapy for patients coping with fibromyalgia syndrome...Sodium oxybate is marketed as Xyrem® in the United States by Orphan Medical...

sodium oxybate, currently approved for the treatment of cataplexy in patients with narcolepsy, significantly improved patients’ self-reported perceptions of their own pain and enhanced the quality of their sleep. At the higher of two dosages studied, the drug also reduced tenderness.... Experts suspect that fibromyalgia syndrome dates back to the 1400s, yet it is a condition that is often misunderstood and misdiagnosed. It need not be so," Dr. Russell said
"

Catch up time...tired of being tired

..no racing today so time to tackle my bulging inbox. However hard I try to keep on top of posting about my life journey with fibromyalgia and about related news and research into relted topics like chronic fatigue syndrome or ME I always seem to be too tired or have no time...so today I will try to round up the most important articles...

Lifestyle maybe accounts for some percentage of cases of chronic fatigue but I doubt if it explains all cases adequately..Naples Sun Times - Local News - 04/11/2006 - I'm so tired of being tired: "I'm not surprised that symptoms of the chronic fatigue syndrome are more often found in women ages 20 to 50, who have full-time jobs besides being housewives.
What do you say: Is something wrong with our bodies or something wrong with the way we're living?"

Some of the abnormalities that have been demonstrated in ME/CFS - Eileen Marshall and Margaret Williams - 310306

Hugely impressive article siting evidence that CFS & ME are not "all in your mind" rather the research shows organic abnormalities which are likely causes or origin of the symptoms. A real disgrace if the patient is blamed - as I was by one particular psychiatrist - and not given the appropriate treatment. Some of the abnormalities that have been demonstrated in ME/CFS - Eileen Marshall and Margaret Williams - 310306: "Some of the abnormalities that have been demonstrated in ME/CFS Eileen Marshall Margaret Williams 31st March 2006...

I find this item most interesting...I wondere where fibromyalgia is?
There is:
"evidence that ME/CFS is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between MS and lupus) "

Also: "there is evidence that up to 92% of ME/CFS patients also have irritable bowel syndrome (IBS)"

Of the items I can understand or know I have without specific tests I can tick off at least half the list as applying to me.

The Model of the Myth? - Eileen Marshall and Margaret Williams - 17th March 2006

This is the debate surrounding anti-psychiatry re CFS and related conditions that I want to be fluent in for my appointment next month with the neurologist...The Model of the Myth? - Eileen Marshall and Margaret Williams - 17th March 2006: "In �The myth of the biopsychosocial model�, N McLaren exposes once and for all the myth upon which the so-called �biopsychosocial� model of illness so favoured by Wessely School psychiatrists depends (Australian and New Zealand Journal of Psychiatry, March 2006:40:277)."

Notable quotes:

"“What we see is that, rather than trying to improve their skills in the area of supposed expertise, some (psychiatrists) are increasingly encroaching upon and appropriating physical illnesses, among them CFS/ME, in which they have no expertise.

“Some psychiatrists act as if the large body of evidence of the physical abnormalities in CFS/ME did not exist and pass the illness off as some kind of belief disorder.

“Psychiatry is replete with examples of the abandonment of humanity, ethics and common sense.

“Why should psychiatrists’ self-generated aura of infallibility in judging the human condition be accepted? Where is the evidence to back up this claim?

“While you have such an excellent opportunity, I’d like you to ask the psychiatrists how they propose to treat ME/CFS phenomena such as low blood volume, cardiac insufficiency, lack of perfusion to areas of the brain, various immune and neurological abnormalities, channelopathy, Low Molecular Weight RNaseL, many deficiencies eg. of potassium, infections with mycoplasma and viruses, to name a few. As you would know, there is well-researched evidence for all of these and more. How do psychiatrists address these serious problems? How do they manage to ignore the evidence for them and to prescribe treatments which are contraindicated? Is this ethical?

Spring update

It feels like spring now as the first daffodil has just opened - worth that week and a half sat on the ground most of the time to put the bulbs in last autumn. I even managed a short wander round the garden and tidied up some dead bits to let the new growth get the weak sun.

I have decided to cut alcohol out altogether again at least until my appointment with the neurologist.

I really must get my blogging of all the recent research and debate up to date as I will be very interested in their opinion re fibromyalgia and the controversy between psychiatrists and other medical professional. Lets hope I have my brain with me on the day!

Two Studies Find Gray Matter Reduction in CFS Patients

When I get "brain fog" I certailny feel as if my brain has shrunk!

Two Studies Find Gray Matter Reduction in CFS Patients: "Cognitive difficulties are found in 85-95% of CFS patients. Now, cutting-edge research from two independent international groups suggests that the volume of gray matter in the brain is significantly decreased in CFS. This decrease in brain tissue, or cerebral atrophy, may be responsible for cognitive problems in some people with CFS...

Although we don't know if the observed cerbral atrophy is a cause of CFS or a consequence, these findings are alarming some members of the CFS patient community, who are concerned about "brain damage." It's important to note that the studies are small and need to be replicated by other researchers before definite conclusions can be made."

Recent Fibromyalgia research Findings

Interesting re neurological involvment, I wonder what the neurologist I am to see next month will have to say....Recent Fibromyalgia Findings: "Although there are some immunological aberrations in FM, including a decreased number of natural killer cells, most researchers now believe that the illness is not an immune system disorder. �Essentially, there is nothing specifically immunological in fibromyalgia � and if there is, whatever little there is, I think it is secondary to the central nervous system problem that fibromyalgia patients have,� says Dr. Muhammad Yunas. �It�s a chronic, neurologic disease....

Recent investigations found multiple triggers for this amped-up response to pain. For instance, FM patients have three to four times higher levels than normal of substance P, a central nervous system neurotransmitter involved in pain processing. Researchers also found lower levels of substances that diminish pain sensation, such as serotonin, norepinephrine and dopamine "

Cytomegalovirus and fibromyalgia

Been to hospital for follow up appointment for my baby after the removal of a lymph gland last December. She has been discharged and the Dr reckons it was due to a viral infection - Cytomegalovirus. Appears to be associated with fibromyalgia frequently going by the number of searches returned in Google for cytomegalovirus AND fibromyalgia but that is hardly a surprise if 50% of the population carry the virus. Good news though..

I am still waiting for an appointment with a neurologist - seems I am non-urgent so it may be anything up to 13 weeks before I see anyone...meanwhile I am still wiped out and get over tired so easily despite now sleeping much better.

Caught Sleeping: Study Captures Cytomegalovirus Dormant in Human Cells (Chronic Fatigue Syndrome & Fibromyalgia News): "Cytomegalovirus, hidden in most people, begins to give up secrets of its stealth. Princeton scientists have taken an important step toward understanding this virus that infects and lies dormant in most people, but emerges as a serious illness in transplant patients, some newborns and other people with weakened immune systems - including those who suffer with Chronic Fatigue Syndrome and fibromyalgia. "

National Fibromyalgia Association news

Excellent article about Lupus and Fibromyalgia - diagnosis and treatment...

National Fibromyalgia Association: "Overlapping Conditions -------Lupus: The Prototypical Autoimmune Disease
What exactly is this disorder, so often misdiagnosed as Fibromyalgia? "

Fibromyalgia latest research papers on PubMed

There are more articles about fibromyalgia, but of the recent research papers the following look the most relevent to me and anyone diagnosed with fibromyalgia or caring for someone with fibro...Entrez PubMed:

"Fibromyalgia: understanding the disease and its social implications]
Rev Esp Anestesiol Reanim. 2006 Jan;53(1):1-3. Spanish. PMID: 16475632

Depression and psychosocial factors in Turkish women with fibromyalgia syndrome.
Eura Medicophys. 2005 Dec;41(4):309-13. PMID: 16474286 [PubMed - in process]

Clinical and psychosocial characteristics of subjects with fbromyalgia. Impact of the diagnosis on patients' activities]

New strategies in evaluation of therapeutic efficacy in fibromyalgia syndrome.

Multidisciplinary approaches for management of fibromyalgia.

Complementary and alternative medical therapies in fibromyalgia
"

Chronic fatigue syndrome The Lancet

Well worth reading for up to date fact and opinions - especially the comments by Douglas Fraser

The Lancet: "Summary
During the past two decades, there has been heated debate about chronic fatigue syndrome (CFS) among researchers, practitioners, and patients. Few illnesses have been discussed so extensively. The existence of the disorder has been questioned, its underlying pathophysiology debated, and an effective treatment opposed; patients' organisations have participated in scientific discussions. In this review, we look back on several controversies over CFS with respect to its definition, diagnosis, pathophysiology, and treatment. We review issues of epidemiology and clinical manifestations, focusing on the scientific status of CFS. Modern neuroscience and genetics research offer interesting findings for new hypotheses on the aetiology and pathogenesis of the illness. We also discuss promising future issues, such as psychopathophysiology and mechanisms of improvement, and suggest multidisciplinary prospective studies of CFS and fatigue in the general population."

"It is time therefore, to reject the misleading biopsychosocial CBT-associated "illness model", with it's barely concealed misanthropic,moralising overtones, and to remind those who seek to interfere with theirfellow human being's "ideas", "cognitions", "beliefs", to "educate" doctors,to alter the "patient's environment", to isolate people from their normalsupport frameworks, to manipulate those frameworks whilst insinuating impure motives in those affected by ME/CFS, that no matter how subtlety presented,these are coercive techniques as old as humanity itself, and none too
dissimilar from the "scientifically therapeutic" techniques of "re-education" or "thought reform" that the psychiatrist Robert Jay Lifton identified and delineated in the context of dissidence within Communist China, consisting of (eight) rather uncomfortably similar psychological themes which in combination "create an atmosphere which may temporarily
energize or exhilarate, but which at the same time poses the gravest of human threats" (3)."

Is it Lupus, FM or Both

Current Newsletter: "Is it possible to have symptoms of lupus, but actually have fibromyalgia?

A: Figuring out whether a patient has lupus, fibromyalgia or both�which is entirely possible - requires a thorough medical history, physical examination and laboratory tests. Diagnosing lupus and fibromyalgia can be difficult because the conditions share some symptoms.

During the medical history, fibromyalgia patients usually describe fatigue and a generalized muscle pain or soreness of the muscles that often is made worse by lack of quality sleep. Lupus patients may also have fatigue and muscle soreness, but initial symptoms may include a rash across the cheeks and nose that gets worse in sunlight, kidney problems, difficulty breathing or a blood clot, stroke or heart attack."

fibromyalgia itching ; scratching, skin complaints, back itch...

Interesting, yet another symptom I have endured AND blamed either my alcohol intake or food additives for!

fibromyalgia itching ; scratching, skin complaints, back itch...: "Itching is just one of a number of skin complaints that Fibromyalgia sufferers can suffer from. And it's apparently one of the most common skin problems among Fibromyalgia sufferers...Do you have Fibromyalgia? Do you find yourself scratching all the time? Do you have dry, itchy skin? Have you developed itchy skin rashes?

Maybe you have back itch? Or itching ears? Or maybe you sometimes even feel that horrible itching sensation all over - as if there are ants crawling all over your body…

Category: Fibromyalgia : fibromyalgia itching , fibromyalgia back itch , scratching , skin complaints , skin problems
Common misspellings of fibromyalgia : fibro myalga, fibro mialga, fibro maligia, fibro mailgia, fibro mayaglia, fibro milagia, fibro myealgeia, fibro myalja, fibro myalgea"

Concerns about Commercial Conflicts of Interest

Concerns about Commercial Conflicts of Interest: Info "relevant to the Gibson Inquiry, specifically the continued ignoring by the Department of Work and Pensions (DWP) and its commercial advisers of the compelling scientific evidence that myalgic encephalomyelitis / chronic fatigue syndrome is not a primary psychiatric disorder. If eligibility for certain benefits becomes contingent upon the intended implementation of compulsory psychiatric �rehabilitation� regimes, in cases of authentic ME/CFS it is likely to result in serious relapse that may be life-long (and may in some cases even result in death)"

Two major concerns which interest me in particular:
"Senior Psychiatrists collude with Medical Insurers to classify ME/CFS as a psychiatric disorder
Government Departments recognise ME/CFS as an organic illness"


(a) the commercial conflict of interest underlying the Department of Work and Pensions (DWP) Disability Handbook entry on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and

(b) some aspects of the impending Incapacity Benefit reform.

It is of particular concern that:

as far as ME/CFS is concerned (and in general), the proposed psychiatric “rehabilitation” regimes ie. CBT (cognitive behavioural therapy) and GET (graded exercise therapy) that are to be imposed on UK claimants are poorly researched; they have already been shown to be of no lasting benefit, and they may be harmful: in four surveys of a total of 3,074 ME/CFS patients, 77% of those who had tried CBT found that it either made no difference or made things worse, and of the 1,467 patients who had tried a graded exercise “rehabilitation” regime, 48% found it to be the most harmful intervention

financial compulsion will rob claimants of their right to give free consent to medical treatment
the treatment regime of the patient’s own doctor will be overridden
patients with no psychiatric history will be forced to attend mental health units

Since the involvement of UNUMProvident in the UK welfare system, so-called “medically unexplained” disorders with no definitive diagnostic test have become a prime target for the refusal and withdrawal of not only State sickness and disability benefits but also of medical insurance benefits: myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) has been specifically targeted by psychiatrists from the “Wessely School”, so named after its most notorious activist Professor Simon Wessely, who is on record as stating that ME does not exist.


Wessely School psychiatrists are heavily involved with UNUM and with the medical insurance industry in general; insurance companies in addition to UNUM with which they are known to be directly involved include Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life, and Permanent Insurance, and as re-insurers, the massive Swiss Re (whose building in London has been dubbed the “gherkin”). For further information on the involvement of Wessely School psychiatrists with the insurance industry, see

http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm

Wessely School psychiatrists have also been zealous in their efforts to remove ME/CFS from the World Health Organisation (WHO) formal classification as a neurological disorder and to get it re-classified as a “mental” disorder. If a definitive test existed, it would be impossible to refute the serious organic pathology that has been internationally demonstrated to underpin ME/CFS. Without such a definitive test, Wessely School psychiatrists are more likely to be successful in their aim of re-classifying ME/CFS as a “mental” disorder, with resultant profits for their paymasters, because “mental” disorders are excluded from insurance cover. On the other hand, if the correct investigations were permitted to be carried out in the UK, and if the evidence of complex multi-system abnormalities was allowed to surface, then the psychiatrists’ paymasters could not legitimately disregard such evidence and company profits would plummet. The insurance industry is determined that this must not happen: UNUM’s “Chronic Fatigue Syndrome Management Plan” (dated 4th April 1995 and authored by Dr Carolyn L Jackson) makes this clear: “UNUM stands to lose millions if we do not move quickly to address this increasing problem”.


If those with ME/CFS who are incapable of work are deemed ineligible for State disability benefits, and if their medical insurance company refuses to pay out, what happens to them? In 21st century Britain, unless those with ME/CFS accept that they have a mental / behavioural disorder, with consequent loss of higher-rate State benefits for which they ought to qualify, they are simply abandoned, because the UK DWP has effectively sanctioned the withdrawal of support from those who most need it.

All....This is despite the fact that the same Government bodies are on official record on many occasions as accepting that ME/CFS is an organic disorder.

Government Departments recognise ME/CFS as an organic disorder
ME was recognised as a physical disorder on 27th November 1987 (Hansard: HC353)

Dr Peter Dewis from the DWP / DLA Advisory Board (who, together with Professor Mansel Aylward authored the Disability Handbook and is now Chief Medical Officer at UNUMProvident – see below) confirmed that before Attendance Allowance became the Disabled Living Allowance (DLA), decisions on eligibility for State sickness and disability benefits were made by doctors (hence the “Handbook for Delegated Medical Practitioners”), but since the advent of DLA, such decisions are now made by non-medical personnel, and the “Disability Handbook” is a guide for these non-medical decision-makers.

Members of Parliament are on record as being gravely concerned about the difficulties their constituents with ME/CFS face with UNUM, as recorded in the House of Commons debate chaired by Sir Alan Haselhurst on 21st December 1999..

In the 2004 “Fitness for Work” Handbook (the definitive text on fitness for work assessment), chronic fatigue syndrome (ME) appears in the chapter on ‘Psychiatric Disorders’.

On 28th June 2004 the Minister for the Disabled, Maria Eagle MP (part of the team running the DWP) was asked by ME Association Trustee Mrs Angela Flack why unfair obstacles are placed on people with ME/CFS to prove their illness beyond doubt, mostly with little support from GPs, social workers and occupational therapists, who themselves have little knowledge of the condition. Maria Eagle then invited the ME Association to give her proof that the DWP’s Disability Handbook did not accurately reflect the severe disabling effects of ME.

Despite this invitation, it seems that the evidence provided has been consistently ignored and that the psychiatric bias continues to dominate DWP thinking about ME/CFS.

The ME Association magazine “ME Essential” (October 2004, page 2) reported that new DWP proposals would force those who claim Incapacity Benefit to have a medical check-up every three months and to undergo “continuous reassessment”. If claimants turn down what the DWP deemed to be “suitable” work, their benefits could be axed altogether. An ME Association member from Lincoln, Mrs Mary Daley, wrote: “I claim the benefit and find the annual review stressful enough. The new proposals will mean a continuous review and a medical every three months. These changes amount to harassment of very ill people. ME sufferers have a hard enough time claiming their rightful benefits, and then to be physically and mentally tortured in this way is a terrible prospect”.


On 10th June 2005, new draft Guidelines on the eligibility of those with ME/CFS for State disability benefits were handed out at the close of a meeting held at the DWP. The new draft revision had been drawn up by the “CFS Group” at the DWP to replace the existing entry in their Decision-Makers’ Handbook; the draft Guidelines were handed out on the basis that their circulation was to be restricted to those at the meeting.

However, this draft version has been obtained and is now available to members of the public through the good auspices of Steve Donnison, webmaster at www.benefitsandwork.co.uk, to whom grateful acknowledgement is made. Enquiries should be directed to info@benefitsandwork.co.uk .

It has been ascertained that the group responsible for this draft consists mostly of those whose psychiatric bias is well known: as a result the Guidelines on ME/CFS are extremely biased, and in many respects demonstrably misleading and erroneous. The group is led by Peter White, Professor of Psychological Medicine at St Bartholomew’s and The London Queen Mary School of Medicine and Dentistry; other members include Professor Tom Sensky from the Department of Psychological Medicine, Imperial College, London (representing the DLAAB); Dr William Bruce-Jones, Consultant and Liaison Psychiatrist, Avon & Wiltshire Partnership Trust; Dr AK Clarke, Medical Director, Royal National Hospital for Rheumatic Diseases, Bath (with a physiotherapist and an occupational therapist from his unit), but no immunologist, neurologist or vascular medicine specialist with published expertise in ME/CFS...

“Clinical examination: specifically there are no abnormal signs found in the neurological or musculoskeletal systems” (this is untrue: there are definite abnormalities in these systems, for example, an abnormal Romberg test; nystagmus; altered tandem gait; ataxia; neuromuscular incoordination; typical cogwheel movement of both legs, course tremor of hands when arms are held outstretched, discolouration of the skin with autonomic circulatory changes indicating abnormal vaso-receptor control etc)

“Neuromuscular function is normal” (this is untrue)

“Impairment of cognitive function (is) usually only mild” (this is untrue)

Paradoxical heat sensation

Yup, a nice new symptom to worry about "Paradoxical heat sensation" according to google is more usually associated with multiple sclerosis or uremic polyneuropathy, one has to search very hard to find any mention of fibromyalgia...too tired to read this article now, will have to come back to it - if I remember...Entrez PubMed: "Quantitative and qualitative perceptual analysis of cold dysesthesia and hyperalgesia in fibromyalgia...

The combination of cold hyperesthesia, cold dysesthesia, and multimodal hyperalgesia suggests a selective pathophysiology at a particular level of integration, possibly in the insular cortex. It is suggested that the aberrations revealed by the supraliminal sensory evaluation may be generic for FMS. Particularly, the aberrations established in all patients for perceived quality and intensity in the cold sensory channel may be an additional diagnostic criterion.
"

Kevin, M.D. - Medical Weblog: Doctors using Google part 2: A day in my life

World changing, life saving? Information.....Kevin, M.D. - Medical Weblog: Doctors using Google part 2: A day in my life: "Doctors using Google part 2: A day in my life"

A Hummingbirds Guide to M.E. A site I will be re-visiting

A Hummingbirds Guide to M.E. :: Information on severe Myalgic Encephalomyelitis: "About the term ME/ICD-CFS...
*Note: The term ME/ICD-CFS may not be widely known as yet but it is used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems."

depression & fibromyalgia occur together

Major depression, fibromyalgia and work status PDF
"CONCLUSIONS: Fibromyalgia and major depression commonly co-occur and may be related to each other at a pathophysiological level. However, each syndrome is independently and negatively associated with labour force participation.
A strength of this study is that it was conducted in a large probability sample from the general population. The main limitations are its cross-sectional nature, and its reliance on self-reported diagnoses of fibromyalgia.

Cough suppressant may ease fibromyalgia pain - PakTribune

News re fibromyalgia treatments Cough suppressant may ease fibromyalgia pain - PakTribune: "A medication normally used to quiet a stubborn cough may also help ease the chronic pain of fibromyalgia, a small study suggests.

Researchers found that the cough suppressant, dextromethorphan, temporarily diminished pain perception in both fibromyalgia patients and healthy adults. The benefit appears to stem from the fact that dextromethorphan blocks the action of a chemical messenger known as NMDA, which helps relay pain signals to the brain.....

Fibromyalgia is a disorder marked by widespread muscle pain and tenderness, fatigue and sleep problems. To be diagnosed with the condition, a person must have pain or tenderness in a number of specific "tender points" on the body.

The cause of fibromyalgia is unknown, but researchers generally believe that people with the condition have "amplified" pain signals due to abnormal sensory processing in the central nervous system.

One theory has held that fibromyalgia "wind-up" pain -- in which repeated touches create pain that intensifies with each new contact -- is caused by an abnormality in the spinal cord structures that process NMDA.

But in the new study, dextromethorphan was as effective at easing pain in the 14 women with fibromyalgia as it was for 10 women without the condition.

Since dextromethorphan acts on NMDA receptors, the findings suggest that people with fibromyalgia do not have a "radically altered" NMDA system, according to Staud’s team."

fibromyalgia symptoms treatment with a single dose of dextromethorphan, however, reduced the women’s pain response to the tests -- with women with fibromyalgia benefiting as much as those without the condition.

According to Staud, dextromethorphan could eventually find a place in the repertoire of treatments for chronic pain.

"What this really means for chronic pain patients is that they need to use a whole host of different interventions to decrease the pain they have," he said. "And in this, dextromethorphan may have a role in the future."

New Year new fibromyalgia symptom free me

I wish.....am now on 100mg nortryptoline and not too sure although I am sleeping better and in a bit less pain I have a few side effects including lack of judgement and burning feelings down my left side especially in my face. Due a review with my GP last week so will update after that..

Top resourse for CFS / Fibromyalgia

CFS / Fibromyalgia FAQ by Dr. Teitelbaum, MD:

CFS/Fibromyalgia - Their Causes and How To Treat Them Effectively! ....a series of questions and answers about chronic fatigue syndrome and fibromyalgia (CFS FMS) reviews what these illnesses are, what causes them, what they feel like, testing, and how to get well.


Although I am sleeping a bit better now with the nortryptoline 4 - 5 hours solid sleep is still a far off dream for me. Am now on 50mg a day and seem to have hit a peak and am now going backwards with frequent sleep disruption and aches and pains creeping back. Have had a couple of really bad nights and feel so shit the next day it makes me wonder how I have kept going all this time with such poor sleep...

"After falling asleep, most people with FMS/ CFS find that they wake-up frequently during the night, especially between two and 4 AM. In addition, sleep is disrupted by pain and frequent urination. All in all, many people are only able to get four to five hours of solid sleep a night without treatment. The disrupted sleep then results in immune suppression and chronic widespread pain. "

New BMJ editor - new views on Fibromyalgia?

CO-CURE Archives -- February 2005, week 2 (#43): "announcing the appointment of Fiona Godlee as the new editor: 'ACT:New BMJ editor: Fiona Godlee - maybe a chance to comment on the BMJ's coverage of ME/CFS in the past'"

CO-CURE Archives -- October 2005, week 5 (#20)

UK doctors reliant on the BMJ may be missing information about the immunological and viral aspects of fibromyalgia and other chronic fatigue syndromes.

CO-CURE: "ME/CFS and Fibromyalgia Information Exchange Forum
Subject: Study reveals pro-psychiatric bias in the British Medical Journal

A literature search identified all papers published on chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) in the British Medical Journal between 1995 and 2000. Analysis of the findings revealed a bias towards the views of one school of thought and a lack of papers on the immunological or virological aspects of CFS. This contrasts with the mainstream American journals, which generally covered a much wider range of subjects and views. We examine the arguments for and against covert editorial policies, and summarise the results of discussions with the relevant individuals and organisations. "

Fibromyalgia Recent Research CO-CURE

Search Results - CO-CURE:
"RES: Fibromyalgia: Progress in Diagnosis and Treatment....Fibromyalgia is a frequent cause of chronic widespread pain and affects up
to 5% of the general population. Diagnosis and treatment have been
especially challenging due to limited knowledge of etiology and poor
response to conventional treatment of pain.

Appreciation for the interactions of neurobiologic, psychologic, and
behavioral factors in the disease pathogenesis has led to improved
treatment options that can be effective in individual patients.

Current evidence advocates a multifaceted program emphasizing patienteducation, medications for improving symptoms, and aggressive use of exercise and cognitive-behavioral approaches to retain or restore function.

RES: Chronic Fatigue Syndrome Research--Prospects" Lists several significant things have come together relatively recently,

January 2002 chief medical officer recognised ME as 'a genuine illness'

Teaching Ideas & Resources - TES - The Times Educational Supplement: "January 11, 2002 was a historic day in the history of CFS/ME. Launching an official report into the illness, Sir Liam Donaldson, the chief medical officer of England and Wales, said: 'Until now, sufferers were ignored or not taken seriously, labelled as hypochondriacs, or urged to pull themselves together and get better on their own. From today that changes.'

Here was a report that, for once, did not mince words.

The report opened with the unequivocal statement: 'Chronic fatigue syndrome (CFS/ME) is a genuine illness and imposes a substantial burden on the health of the UK population.' It went on to acknowledge that 'patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition'. And it reprimanded those professionals whose own scepticism had 'done nothing to dispel public disbelief'.

The biggest problem facing both sufferers and doctors is undoubtedly the lack of any definitive diagnosis or test for the disease. Despite this, said the report, it is now 'clinically recognisable', and any clinician lacking the wherewithal to recognise it should get some training, and fast....

It is so difficult to get a doctor to diagnose CFS/ME that sufferers or their parents frequently regard success as a matter for celebration. Only then does it hit them that diagnosis, while helpful, is not an end in itself, and that a cure might not be forthcoming in the foreseeable future.

...treatment is often aimed at reducing symptoms and can encompass mainstream and complementary methods, ranging through pharmaceutical drugs, homeopathy, behavioural therapies, acupuncture and diet changes.

Perhaps the most successful and therefore the most popular technique, and one which is being trialled by the Medical Research Council, is called Pacing. AYME describes this as an energy management strategy aimed at preventing patients falling into a "boom and bust" vicious circle of over-activity and relapse. "Patients alternate activity with rest, and switch between physical and mental tasks so that they do not become exhausted. Patients learn to spot the warning signs of impending exhaustion and stop activity before that point." The fact that, for severely affected patients, "activity" may mean just sitting up in bed for a few minutes, is a measure of how devastating CFS/ME can be.

According to the ME Association, only "a fairly small percentage" of people who suffer from CFS/ME manage to return to completely normal health, and the time taken for this recovery may vary widely, from months toa number of years. According to the charity, the majority of sufferers will continue to fluctuate between good and bad periods of health, with relapses often precipitated by infections, operations, temperature extremes or stressful events.

"

Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do

Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do: "Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do

If you had been a healthy, active person and develop fibromyalgia, the symptoms can create havoc in your life. Your inability to engage in activities you once enjoyed can cause you to become frustrated, angry, worried, or depressed. Your inability to meet the needs of your children, spouse, job, or community may contribute to a sense of inadequacy and worthlessness. Your friends may start to distance themselves. You may lose your job or marriage, causing serious financial distress and emotional pain. These are all normal reactions to the losses you suffer when fibromyalgia strikes. You are not alone, however.

Many people with other illnesses such as rheumatoid arthritis, heart disease, cancer, diabetes or other chronic illnesses have the same reactions. Unfortunately, because fibro patients have no obvious physical or lab abnormalities, many have been told by their friends, family, or even their doctors that there is nothing wrong with them and their symptoms are all in their heads. “Just get the stress out of your life,” they say, “and you will be fine.” These people are wrong. Fibromyalgia is a real illness and its psychological impact should not be dismissed...

Studies have shown that when people were deprived of just a few nights’ sleep, they developed many of the same symptoms fibromyalgia patients have, including emotional distress and problems with thinking, memory, and judgment...

Research shows that a combined multidisciplinary treatment approach is the most effective way to achieve symptom relief. Although it may not be a cure, many patients find that making appropriate changes in their lives can reduce their symptoms, in some cases by as much as 90%!

What helps:

--Cognitive behavioral therapy- time limited, not in depth- 70%improvement when used in conjunction with other treatments and better than just medication alone

--Changes negative thought patterns and behaviors to positive ones

--Stress management- meditation, relaxation techniques, appropriate breathing

--Biofeedback

--Education

--Balance, pace activities

--Avoid “toxic” relationships and activities

--Don’t overdo

--Positive attitude/ accept your limitations/be joyful for what you have

--Getting support from knowledgable healthcare professionals

--Repeat the serenity prayer often

--Journal thoughts, feelings

--Become aware of what your body is saying to you

--Do at least one thing daily you enjoy – learn to say no

--Take care of flares when they start- have a plan in place

--Avoid isolationism- join a support group

--Change perfectionism – you can’t do everything

--Get help - it is not a sign of weakness

Walking the road to wellness is better when you don’t walk alone

Rosalie Devonshire, msw, lcsw, fibromyalgia survivor

Editor's note: Taking Charge of Fibromyalgia: Everything You Need to Know to Manage Fibromyalgia (2005 Edition) By Julie W. Kelly, M.S., R.N., and Rosalie Devonshire, M.S.W., is a great and highly useful guide to self-managing your FM treatment program, and is an excellent resource for patients, their families, and health care professionals. This is the updated 2005 version with all the latest treatment and resources information including new research and physician treatment protocols. To buy the book, please click here: http://www.immunesupport.com/shop/Books.cfm "

Tired Saturday

Been busy all week with new project and stuff plus have doubled new tablets - still broken sleep....Online gambling a housebound housewife making a living from backing horses playing poker: "Saturday l tips online nowGambling Housewife's Sat pick of the tipsters tips

Treatment of Fibromyalgia Open Trial of Pindolol

Shows improvement in Tender Point Count Open Trial of Pindolol in the Treatment of Fibromyalgia: "Open Trial of Pindolol in the Treatment of Fibromyalgia ImmuneSupport.com

BACKGROUND: Evidence suggests that fibromyalgia is related to both chronic sympathetic hyperactivity and decreased levels of serotonin.

OBJECTIVE: To examine the efficacy of pindolol, a mixed serotonin (5-HT)1A presynaptic autoreceptor/beta-adrenergic receptor antagonist, in the treatment of fibromyalgia.

RESULTS: There was significant improvement in primary outcome measures, including Tender Point Count ..

depression and anxiety scores did not change significantly among women who completed the study, while the impact on cardiovascular parameters was clinically insignificant.

CONCLUSIONS: While the current results are encouraging, further studies are needed to determine whether pindolol might be effective in the treatment of fibromyalgia. Limitations of this study include small group size and lack of placebo control."

Finally some quality sleep...Allegron working?

Have been on Nortriptyline 12 days now and managed to sleep till 6am today albeit still with frequent waking. I admit I was knackered yesterday but previously that would make no difference at all, I could not even sleep off a hangover ( very infrequent I have those now as I drink far less...)

So I am looking forward to increasing the dose and hoping for better sleep and less fibromyalgia symptoms. The aches and pains have been low grade and fibro fog present but just about bearable although I needed the lift from a real coffee to get me through 2 hours withe girls last evening then collapsed into bed after my dinner.

ME CFS & Fibromyalgia Research Notices, Articles and Posts

The best site I have found for recent in depth research into fibromyalgia, chronic fatigue and related syndromes

ME/CFS & Fibromyalgia Research Notices, Co-Cure Articles and Posts

Includes a meta analysis: "An Analysis of CFS Research Groups. [These are the men and women on the front lines of CFS research.]"

Trends In CFS Research A Laymen’s Guide to CFS Research

Marketing update

Keywords that are doing particularly well include:
fibromyalgia
symptoms of fibromyalgia
treatment fibromyalgia
fibromyalgia syndrome
fibromyalgia diet
fibromyalgia help
fibromyalgia diagnosis
fibromyalgia disability
Gotta go, off for psychotherapy though don't feel as if I am getting very far in getting rid of my baggage.

The new tablets are due to be doubled in dose this Friday...hoping for better sleep...

Fibromyalgia Amitriptyline - Mestinon for severe side effects

Fibromyalgia by David A. Nye, M.D. "Amitriptyline frequently produces mild side effects. An increase in sleepiness or dizziness should be expected when it is first taken. Starting at a low dose taken an hour or more before bedtime and increasing gradually helps minimize these initial side effects. Those patients who notice an initial stimulant effect of amitriptyline, perhaps with a rapid heartbeat, should take it earlier in the evening, so that this effect has given way to sedation by bedtime. By the end of two weeks, most patients are noticing that the side effects are settling down and the medication is beginning to help their fibromyalgia symptoms.

Almost everyone on enough amitriptyline to help fibromyalgia gets a dry mouth and often some constipation. If these side effects are severe, another medication called Mestinon can be added to block them, generally with no other side effects of its own. Amitriptyline may cause a craving for sweets, although usually not for calories in other forms. I recommend you avoid sweets entirely while on amitriptyline to avoid weight gain.

Daily, vigorous exercise is also important in the treatment of fibromyalgia. Exercise is more effective if done in the evening. Fifteen to thirty minutes of exercise is usually sufficient. The exercise seems not to work through conditioning of muscles but rather through a direct, possibly hormonal effect on sleep. Patients who have been exercising regularly and then miss a day usually find that their fibromyalgia symptoms are significantly worse the next day.

The kind of exercise is unimportant as long as it is vigorous. Just make sure to pick something that doesn't increase your pain. The exercise should get your heart rate up and and make you get a little short of breath. Less than vigorous exercise provides no benefit and may actually make you feel worse. Be sure to warm up adequately with some stretches before starting to exercise to avoid injury.

Even with good results from treatment, brief relapses are common, often caused by temporary sleep disturbances, such as staying up as little as one hour late one evening, or skipping exercise. You will do best if you "give in to it" when this happens and try to get extra rest."

Started on Amitriptyline for Fibromyalgia

Seem to have turned a corner with my GP, now appears to be onside with me in trying to treat me for fibromyalgia. She dropped the name of the rheumatologist at the local hospital who specialises in fibromyalgia into the consultation and has prescribed Amitriptyline
as it is considered one of the most effective treatments for fibro as it acts to give deep sleep and helps with the pain...Started on 10mg, have to double dose after two weeks then go back to review.....

Also had DSS medical yesterday, the doctor also seemed to be onside...advising me to keep up my efforts, daily goals, exercise etc and to take jacuzzis or saunas to make sure muscles are warm and reduce pain. He also reckoned I look a lot younger than 47!

Fibromyalgia by David A. Nye, M.D. "Patients with fibromyalgia often report subjectively shallow sleep as well as an increase in fibromyalgia symptoms after disturbed sleep (Campbell 1983). In 1973, Hauri and Hawkins reported abnormal amounts of electroencephalographic alpha activity during deep sleep in patients with symptoms of fibromyalgia (Hauri 1973). Moldofsky et al. reproduced these findings and were able to induce fibromyalgia symptoms in normal volunteers by depriving them of deep sleep (Moldofsky 1975). They noted however that sleep deprivation did not induce symptoms of fibromyalgia in subjects who exercised. Subsequent trials have confirmed the value of aerobic exercise in the treatment of fibromyalgia (McCain 1988). Exercise increases time spent in deep sleep (Hobson 1968), perhaps the the mechanism for its theraputic efficacy.

The presence of considerable symptom overlap in fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome and the efficacy in all of low doses of amitriptyline has led to speculation that they may be different facets of the same underlying, as yet unknown disease process, possibly a viral infection (Goldenberg 1990, Yunus 1989). Although no specific inheritance pattern has been identified, an increased incidence in relatives of affected patients has been noted (Pellegrino 1989).


Most patients with fibromyalgia respond favorably to low doses of amitriptyline, vigorous exercise, and maintenence of a regular schedule of adequate amounts of sleep. On this regimen, 30 (83%) of the last 36 patients I have seen with fibromyalgia have had substantial improvement.

Amitriptyline is more effective than anti-inflamatory medications or other anti-depressants in the treatment of fibromyalgia, and appears to work through its effect on deep sleep (Goldenberg 1986). It should be started at 5 mgs. an hour or so before bedtime. The dose should be increased by 5-10 mgs. every 4-7 days to maximum relief of symptoms without unacceptable side effects. In the 30 patients mentioned above, the best dose ranged from 2.5 to 300 mgs. per day but generally was between 30 and 60 mgs. per day. The few patients who experience an initial stimulant effect and tachycardia from amitriptyline should take it earlier in the evening so that this effect has given way to sedation by the patient's usual bedtime. The dose usually needs to be pushed to the point that it causes a significant and continuous dry mouth. When dry mouth and constipation are sufficiently bothersome, pyridostigmine may be used to block these and other peripheral anticholinergic side effects. A craving for sweets is a common side effect of amitriptyline so I recommend that patients taking amitriptyline avoid sweets entirely to avoid weight gain.

Daily, vigorous, low-impact aerobic exercise has also been shown to have a beneficial effect on fibromyalgia symptoms (McCain 1988). It appears to be more effective if done later in the day. The kind of exercise does not seem to matter as long as it gets the heart rate into the aerobic range. Aerobic dance videotapes can be used at home at a convenient time every day, are paced, and provide warm-up exercises that can help prevent injury. The patient should choose a type of exercise that does not aggrevate their pain. If the pain is worst in the back and legs, for example, exercise just the arms.

Getting adequate sleep is essential. Fibromyalgia symptoms commonly appear during times of sleep disruption (12) such as may be brought on by stress, pain, starting shift work, or having to get up to attend to young children. At times just re-establishing a regular sleep schedule may be enough to relieve symptoms.

Education, frequent follow-up visits, temporary dose reductions, and reassurance help to get patients over the initial side effects of amitriptyline, the most bothersome of which are usually fatigue and dizziness. It may be difficult to convince patients to get adequate exercise because of their fatigue and because it may initially increase the aching. It may take two weeks or so before the beneficial effects of the amitriptyline and exercise outweigh their side effects. The physician should check on the amount and type of exercise and sleep at return visits and reinforce their importance. Patients should be warned that despite optimum treatment and good initial results, brief relapses are common, often caused by temporary sleep disturbances. The patient will do best if she "gives in to it" and tries to get extra rest during a relapse.


In summary, fibromyalgia is a common, chronic, often disabling disorder of unknown etiology associated with disordered deep sleep and probably abnormalities involving serotonin or other neurotransmitters. Most patients can be helped with a combination of amitriptyline, exercise, and maintenence of a regular sleep schedule. Think of this condition in any patient with a complaint of aching and look for associated symptoms and tender points to confirm the diagnosis.

Table 1: Associated signs and symptoms (Wolfe 1990).
widespread pain -- 97.6% of patients
tenderness in tender points -- 90.1
fatigue -- 81.4
morning stiffness -- 77.0
sleep disturbance -- 74.6
paresthesias -- 62.8
headache -- 52.8
anxiety -- 47.8
dysmenorrhea history -- 40.6
sicca symptoms -- 35.8
prior depression -- 31.5
irritable bowel syndrome -- 29.6
urinary urgency -- 26.3
Raynaud's phenomenon -- 16.7

Other commonly reported associated symptoms include dizziness (often with some swaying on Romberg testing), an eczematous malar rash and chronic itching (my unpublished observations).


--------------------------------------------------------------------------------

Table 2: Location of tender points (Wolfe 1990).
suboccipital muscle insertions at occiput
lower cervical paraspinals
trapezius at midpoint of the upper border
supraspinatus at its origin above medial scapular spine
2nd costochondral junction
2 cm distal to lateral epicondyle in forearm
upper outer quadrant of buttock
greater trochanter
knee just proximal to the medial joint line.

To meet ACR 1990 diagnostic criteria for fibromyalgia, digital palpation with an approximate force of 4 kgs. must produce a report of pain in at least 11 of these 18 (bilateral) tender points. Other areas can be tender but the tenderness should be focal rather than diffuse. In addition, tender points must be present on both sides of the body, above and below the waist and in the midline. Widespread pain must have been present for at least 3 months. Some accept a diagnosis of fibromyalgia with fewer than 11 tender points if several associated symptoms from table 2 are also present (Wolfe 1989).

Useful treatments for fibromyalgia syndrome -- 330 (7485): 0 -- BMJ

Useful treatments for fibromyalgia syndrome -- 330 (7485): 0 -- BMJ: "Useful treatments for fibromyalgia syndrome

A total of 505 articles were reviewed and classified according to their level of evidence...

Strong evidence for efficacy was found for treatment with amitriptyline (Elavil), cyclobenzaprine (Flexeril), exercise,
cognitive behaviour therapy, and patient education.

Modest evidence for efficacy was found for tramadol (Ultram), various selective serotonin reuptake inhibitors, acupuncture,
hypnotherapy, and biofeedback.

Weak evidence for efficacy was found for growth hormone therapy, SAM (S-adenosyl-methionine), chiropractic and massage therapy, electrotherapy, and ultrasound.

No evidence of any evaluation or effectiveness was found for steroids, non-steroidal anti-inflammatory drugs, melatonin,
benzodiazepine hypnotics, or trigger point injections.

Bottom line Treatments for fibromyalgia syndrome with the strongest evidence for efficacy are amitriptyline (Elavil), cyclobenzaprine (Flexeril),
exercise, cognitive behaviour therapy, patient education, and multidisciplinary therapy."

Action for M.E.

Action for M.E.: "Improving the lives of people with M.E.

M.E. is also known as Chronic Fatigue Syndrome (CFS). It is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS)."

New address for website

index: "Online Gambling and Marketing Diaries of a Maven"