Thursday, December 27, 2007

Drug treatments for Fibromyalgia

Co Cure report: Fibromyalgia syndrome (FM) is a condition of chronic and diffuse
muscular pain affecting particularly middle aged women. The aetiology
of FM is not completely understood and it is currently considered a
disorder of pain regulation.

The most efficacious compounds include the tricyclic drugs and mixed
reuptake inhibitors. Recent works suggest that the anticonvulsant
medications pregabalin and gabapentin are also effective. Moreover,
two serotonin and norepinephrine-reuptake inhibitors-duloxetine and
milnacipran show encouraging results in treating FM symptoms.

The results of clinical trials of anti-inflammatory medications have
been generally disappointing, but three RCTs have found that tramadol
(with or without acetaminophen) is effective in FM.

Personnally I have benefited from taking the max dose of nortryptaline which has improved my sleep hugely though not cleared all problems as evidenced by being up from 4am today after waking a huge number of times. . rough day ahead especially as will be visiting mum who had a very bad day yesterday with new pains requiring extra morphine...

Tuesday, October 23, 2007

Depression linked to allergies in kids

Wow, having had excema and hay fever plus underlying dairy intolerance this is really of interest to me..

Reuters Health - "Research in psychiatrically ill children and adolescents suggests that those with depression, anxiety and other so-called "internalizing" disorders are more likely to have allergies.

Among a sample of 184 young people being evaluated for psychiatric disorders and allergies, 105 (57 percent) had a history of allergic disorders, including asthma, hay fever, hives and eczema...

Researchers found that youth with internalizing disorders were almost twice as likely to have a history of allergies than those with a diagnosis that wasn't classified as an internalizing or externalizing disorder...

"These findings add to the growing body of evidence supporting an association between anxiety, depressive, and allergic disorders," write Dr. Mauricio Infante and colleagues from University of Wisconsin, Madison in the Journal of Clinical Psychiatry.

The findings also suggest that these psychiatric and medical disorders "may share risk factors and underlying pathways that contribute to the development of both types of disorders."

The Wisconsin team notes that studies are needed to identify the reasons for these associations so that effective treatment and prevention strategies that target both disorders can be developed."

Monday, September 24, 2007

Virus Identified in Patients with Chronic Fatigue Syndrome

Could this be the virus I had all those years ago which heralded 20 years of pain, depression and very very poor health?

If this virus proves to be diagnostic of the various types of chronic fatigue will the CBT approach take a back seat and medical intervention become possible? I hope so!

National CFIDS Foundation, Inc. (NCF) of Needham

"Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy"

Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic Afflictions, LLC has discovered a major neuropathogen identified as an RNA virus designated as Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of neurological disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy of unknown cause.

Dr. Robbins had determined that 96% of the blood samples and 91% of the spinal fluid samples tested positively for Cryptovirus specific antibodies in these CFS patients.

The NCF has conducted its own preliminary research into the potential role of Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded research first confirmed the lack of a vital protein, known as Stat-1, in the blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable role in immunity.

Monday, August 13, 2007

Pfizer om: The Painful Truth About Fibromyalgia

Sponsored by a drug company but anything that raises awareness about fibromyalgia is to be welcomed...

Fibromyalgia affects more than six
million Americans, and is the most common chronic pain condition in the
U.S. Now there is a new educational campaign designed to raise public
awareness, correct misperceptions and offer support to the millions of
people living with fibromyalgia. Lynne Matallana, Founder and President of
the National Fibromyalgia Association (NFA), has more on what is being done
to educate the public about this disease.
Listen to this report from Pfizer at:

Thursday, July 12, 2007

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.



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".


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.


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.


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.


Wednesday, July 04, 2007

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.

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

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

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."

Friday, June 29, 2007

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


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
Crohn disease
Celiac sprue
Tropical sprue
Radiation enteritis
Diabetic gastropathy
Carcinoid syndrome
Whipple syndrome
HIV enteropathy

Thursday, May 31, 2007

Fibromyalgia myths dispelled...

Fibromyalgia Myth Busting

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

by Karen Lee Richards

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

Thursday, April 12, 2007

Chronic Fatigue Syndrome recorded as a cause of death

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
Dr John H Greensmith
ME Free For


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

Wednesday, March 07, 2007

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...

Monday, January 15, 2007

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 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

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'

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; 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 reads all your e-mails but regrets that she cannot answer them all personally

Helpful websites

a.. - 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

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