Tuesday, December 30, 2008

Northallerton and District ME Support Group

ME Research UK — Group friends: "Northallerton and District ME Support Group
The group was re-launched in September 2006. It is now run by local people with ME. We welcome anyone living in Northallerton itself or any of the nearby towns and villages who have an interest in ME — sufferers, their families and carers. We are a small, friendly/informal group. We meet to provide mutual support and exchange information whilst enjoying a chat and refreshments.
Meetings: The group meets on a monthly basis (usually the first Monday of the month — except bank holidays when an alternative date will be chosen) in a central Northallerton location. Meetings take place from 1.30 to 3.30 pm. The meeting room has full disabled access with parking and transport links nearby. If you would like to come along to a meeting or find out more about the group, please contact Gillian Dodsworth (Chairperson), weekdays between 1 and 6.30 pm.
Tel: 01609 779452."

CFS and medical textbooks, Doctor education, patients testify

Oh, please, yes, please! I am sick and tired of being treat like a moron by the medical profession or as if my condition is all my own fault...lets get them educated!

Just one extract from what seems a very important conference. CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE


"Dr. Jason's Presentation

Dr. Jason said that he also planned to give his presentation at the Reno
IACFS/ME conference.

He noted that there are about 200 publications each year on CFS, according
to Freidberg and Associates. It is unclear how CFS is represented in the
published literature, particularly with medical textbooks. Medical textbooks
are important because they are:

. A cornerstone in the training of medical staff and students.
. A main source of references and reviews for medical professionals.
. A source of information on coding and treating a variety of illnesses.

The objective of Dr. Jason's study was to evaluate the coverage of CFS in
medical textbooks to determine the extent and comprehensiveness of CFS

Textbooks were gathered from a number of sources including university
medical school libraries and medical school book stores. The study looked at
129 textbooks in different specialty areas. The areas of interest in the
study were the number of pages and percent of space allotted to CFS. Dr.
Jason discussed pages in his presentation. The comprehensiveness and extent
of representation of CFS information was included, and CFS was compared with
to other illnesses.

Page representation:

. Looked at a total of 140,552 pages in 129 textbooks. Always took the most
recent version of a textbook, primarily within the last seven or eight
. CFS was represented on 125 pages, or .089 percent of the potential pages
. Holistic, psychiatry, and internal medicine texts had the highest
percentage of mention of CFS; endocrinology, obstetrics, and emergency
medicine the least.

If CFS was mentioned, the study also examined information concerning:
. The illness ideology.
. The probability of Axis 1 disorder.
. Treatment options.
. Prevalence rate.
. Inclusion of ME terminology.

. 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
The problem, of course, was that there was very little mention.
. 42 textbooks (32 percent) had something about etiology. Sometimes it was
biogenic, sometimes psychogenic, sometimes both.
. 17 textbooks (13 percent) mentioned the high probability of Axis 1
Disorder [a major psychiatric problem].
. 25 textbooks (19 percent) mentioned some criteria.
. 37 textbooks (28.7 percent) indicated some treatment associated with CFS.
The most common were cognitive behavior therapy, anti-depressants, graded
exercise or exercise, and supplements.
. Only 18 textbooks (14 percent) had any mention of prevalence rates.
. Only 19 books (14.8 percent) had any mention of ME terminology.

Summarizing this part of the study: Critical domains within CFS are not well
represented in medical textbooks, either in terms of etiology, criterion, or
treatment options.

Illness Comparison

Next the study analyzed a random sample of 45 books from the 129 to compare
CFS with illnesses that are much more prevalent-cancer and diabetes-and with
illnesses that are less prevalent-MS [multiple sclerosis] and Lyme disease.
Even the illnesses that are less prevalent than CFS have greater coverage in
medical textbooks. CFS appeared in 24 percent of the 41,922 pages while Lyme
disease appeared in 61.8 percent and MS, 53 percent.

Major findings:
. CFS is underrepresented in medical textbooks.
. CFS is also given fewer pages than diseases that are less prevalent.

Why does this matter?
. 77 percent of CFS patients reported they had experienced a negative
interaction with a healthcare provider.
. 66 percent believe that their condition had been made worse after seeking
care from their doctors.
. Family physicians feel the continuing education and training they received
leave them unable to diagnose and manage CFS.
. 48 percent of general practitioners did not feel confident that they could
diagnose CFS.


. Healthcare professionals need to be adequately trained and provided with
up-to-date, non-biased information in their textbooks.
. Medical textbooks may be a critical component in raising CFS awareness and
there is a clear need for this illness to receive more representation.

Additional points of interest:
Migraines plus CFS suggests:
• Autonomic abnormalities
•Neurogenic inflammation
very likely contribute to the high level of overlap between migraines and CFS.
From a treatment perspective, if you identify migraines in 88 percent of your CFS people, you should get them started on appropriate therapy.
From this we wanted to look more at the autonomic nervous system.

Hypothesis: Central nervous system dysfunction is a critical component of CFS and related syndromes such as FM, Persian Gulf War Illness, multiple chemical sensitivity, irritable bowel and bladder syndromes, and other allied conditions. Analysis of the fluid flowing from the brain will identify factors that may indicate the pathology of CFS to direct the creation of new treatments, and serve as diagnostic biomarkers for future testing.

Researchers obtained cerebrospinal fluid from Gulf War Illness (GWI) subjects (most also had CFS), FM subjects (many had CFS), and control subjects for a total of 62 subjects. Researchers compared pooled samples from GWI, pooled samples from CFS, and pooled samples from controls. The identified the proteins that were only present in the GWI and CFS people. They also took individual specimens from the CFS and GWI people and compared them to individual specimens from control subjects.

Dr. Baraniuk: It was mind boggling because we ended up with about 10 proteins that were present only in our CFS group and not present in the control group. The odds of this are about 10 to the minus 15. We’re currently doing the proteomic analysis using a high-end orbitrap mass spectrometer to see if we get the same pattern. The key proteins from the CFS-related proteome, I think, give us some potential clues as to what’s going on

Toni M., Maryland
Thank you, Chairman Oleske and members of the Chronic Fatigue Syndrome Advisory Committee, for this opportunity to address issues of help and accommodation for those living with CFS.
My story is one of resistance and denial of disabling conditions. Looking back, I had something wrong since early childhood. My body became so overwhelmed over time, I ended up in a bad state of chronic fatigue syndrome.....
As the nature of CFS becomes better understood by more professionals, more CFS patients may appreciate their physical and cognitive deficits—“may” is the operative word here. Don’t count on it. Education helps, knowledge helps, but you have to be ready to hear it. But taking limitations seriously can help you ask for help a little faster than I did. Help is hard as CFS people hold onto the idea of recovery any minute, as I did. When you can dress yourself and toilet yourself and do dishes occasionally and go out to dinner and go shopping—although not sit at a job without feeling horribly sick—when you have that going on in your life, the idea of recovery any minute is ever present…the idea that life will go back to what is normal for them—for me—before CFS was present.
Programs are severely needed that help CFS people and understand that their wishes for recovery and their up and down days are normal. We live and cope with CFS with difficulty, often struggling with symptoms for years or decades without diagnosis, as I did, without even physician support, as members of this committee know. Programs helping CFS patients cope with the nature of their conditions has the potential—the potential; don’t count on it—to short circuit patients’ denial and resistance, hastening acceptance, with which the best of us need help; helping us move toward healing.

Lars Ellen M., Arizona
I am 51 living in Tucson with my husband. I have CFS, OI, FM, allergies, Hashimoto’s disease, pernicious anemia, fluctuating thyroid, ADHD for which I cannot use drugs because of memory loss side effects, sleep apnea, restless leg syndrome, and postural limb movement syndrome causing jerking and kicking the nonsense out of bedpost and darling husband.
Disability retirement from work was a result of a series of events culminating in five back surgeries beginning in 1999. I use two canes to walk short distances and I drive a little. Antibiotics are needed for the foreseeable future due to chronic MRSA [methicillin resistant Staphylococcus aureus] infection causing chronic digestive problems.

CFS patients need programs designed to help patients more easily find resources, tools, and alternatives to maneuver past the obstacles of disability, enabling patients to feel more part of life and the lives around them. It is as confusing for patients as for their families that some days we seem almost normal only to relapse into a heap the next day. This is serious stuff, and patients and their families benefit by knowing what to expect while we wait for research to help some more.
CFS means not knowing what to expect on a given day. Some days, things get done; some days, I may be so stove up that showering, bathing, changing clothes is out of the question. Dressing, especially to be out and about, is nothing like my former life. I have no more strength for pulling on pantyhose or stumbling in high heels. I dress in easy access clothing and comfortable shoes. But there are days I crawl out of bed, rubber band my uncombed hair, and spend the entire day in pajamas.
Neurological symptoms cause brain fog and trouble holding onto instructions, directions, words, and names, including those of my two grown sons, like a game of charades or password. Shopping for a mattress, I gestured wildly with slurred speech, exclaiming, “I need bird…feather…not up…for top.” The word I sought was “down” for a mattress pad stuffed with down feathers. B12 shots help, but after a shot a few days ago, writing this has taken several days—before editing.
My best friend and husband, Glenn, and I have set up our home for my ease of movement—more accessible kitchen and laundry, floors that won’t trip me up and are softer to walk on. I need an indoor temperature of 66 degrees to deal with chronic temperature dysregulation. I wear long sleeves to hide bruises from stumbles and to keep me comfortable in my cooler than normal house.
People like me feel overwhelmed by things we must do much less fun things like travel. We feel almost forbidden to have fun once we no longer work. I have given this a lot of thought. ...

Friday, December 26, 2008

Fibro at Xmas

. . . is a total pain!

Tired, in pain and trying to think through the fog topped off by a chronic coucgh and the return of tendonitus in my shoulder. . .

Monday, December 22, 2008

graded exercise therapy not the answer

December 2008: ME Free For All: "Re: ME controversy hampers research, Independent, 19 December 2008
Sir Peter Spencer, Chief Executive of Action for ME, writes, 'to print that 'the best treatment [for ME] is graded exercise therapy' is wholly misleading.' (ME is a devastating illness, but don't lose all hope, Independent, 15 December 2008). He is quite right and Action for ME's most recent survey, showing that GET makes a majority worse, is supported by other research in Japan and the USA.

Yet, incredibly, Sir Peter's own organisation is calling for more funding to increase the provison of the very treatment, we have all agreed, has been shown to make most M.E. sufferers worse after it, some irrecoverably so, leaving them housebound or in a wheelchair. Even more astonishingly, they are getting it.

In the meantime, promising biomedical research, including the genetic work referred to by Dr Anne Faulkner in her letter (ME controversy hampers research, Independent, 19 December 2008), is being starved of public money and is having to rely on charity or go undone.

The advice of this organisation and many other M.E. charities is, unequivocally, to choose the option, contained in the NICE (National Institute for Health and Clinical Excellence) guidelines, of declining treatment in one of the regional clinics unless or until they have reliable evidence to support them offering it.

Yours sincerely
Dr John H Greensmith
ME Free For All. org"

Monday, December 15, 2008

cfs/meKnowledgeCenter - Information and Guidance for those affected by CFS/ME

cfs/meKnowledgeCenter - Information and Guidance for those affected by CFS/ME has the makings of a great site..

Debating with myself whether it is worth going back to my GP again in the maybe forlorn hope of getting her to understand how disabling my fibromyalgia is. Last visit (for RTI) I mentioned new hot sweats, quite different to the previous which probably were menopause related, but no, she insisted they were probably still menopausal. Strange then that they stopped shortly into the course of anti-biotics. Still got horrendous post nasal drip and feel like a fever / headache is creeping back up on me too...

Anyway, last week I decided to tackle emulsioning the 4th wall in our main sitting room, (I did one in 2006 and one last year) - and took me a whole bloody week, leaving me totally wiped out every day despite tackling it a bit at a time. I only made it out of the house twice, too tired and fuddled to drive. Frustrating nightmare illness. . .

Wednesday, December 10, 2008

This Morning | Health | Myalgic Encephalopathy ME 123 - ITV Lifestyle

This Morning | Health | Myalgic Encephalopathy ME 123 - ITV Lifestyle: "M.E
Vicky Shepherd, 23 has been battling with Myalgic Encephalopathy (M.E) for over half her life.

Vicky believes the illness was triggered from when she had Glandular Fever when she was 11, but it took five years before Doctors came up with the diagnoses.

Vikki explains: 'At the time the doctors put my symptoms of contact migraine. stabbing pains in the head, flu symptoms, extreme fatigue and the fact I could only walk short distances.”

She adds: “I went from doctor to doctor, to a neurologist who couldn't see anything wrong, it wasn't until just after my 16th birthday when I finally go diagnosed.'

All types of people at all ages are affected. Severe fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace in sufferers.

It is often see that viral infection can onset the disease. However, an accident or operations can also be a trigger, although some people experience a slow, insidious onset.

Unfortunately, there is no widely accepted cure and no universally effective treatment for M.E.

Doctor Charles Shepherd explains, 'We can prescribe the patient with some drugs which may help with symptoms, there's research in Amercia into an Anti-Viral drug at the moment, however as it stands, there is no cure.'

Association of Young People with ME
Web: www.ayme.org.uk

Vicky’s charity
Web: www.postpals.co.uk"

I actually mailed in as follows:

Wonderful to see the medical mindset challenged and dignity given back to ME sufferers.

I am now 50 and the past 20 years have been a living hell overall with brief periods of ok health and energy. Only once have I been treated as a whole person by the medical profession instead I get treated for numerous conditions and symptoms as if they are all seperate.

These include depression, IBS, insomnia, recurring infections, joint and muscle pain and above all tiredness and lack of energy. I have no over-arching diagnosis, the closest being my GP saying, "oh, that sounds like fibromyalgia".

The effect on my life have been immense, I went from being top first year student across the whole of Durham University going on to gain a university scholarship for post graduate study to being a suicidal psychiatric in patient soon after a strange episode when my ankles and lower legs swelled, became painful and hot, diagnosed as a virus by my GP.

From then on life felt like wading through treacle...Better jump to now or I will never get this sent. Sofa bound today because yesterday I thought I felt well enough to emulsion a small wall. By last night I was hurting all over, foggy brained and totally exhausted. This morning I feel as if I am starting with flu - this sequence happens if I ever over do it...any help and advice most welcome and the article today helps me feel a little less alone.

Tuesday, December 02, 2008

Diagnostic Test for Fibromyalgia? Results of Imaging Study

Diagnostic Test for Fibromyalgia? Results of Imaging Study: "A study published in The Journal of Nuclear Medicine provides evidence of abnormal brain activity in fibromyalgia that is visible on a special kind of scan.

The scan, called single photon emission computer tomography (SPECT), showed abnormal blood flow in the brains of people with fibromyalgia - high levels of blood in an area known to deal with pain processing, and low levels in areas believed to deal with emotional response to pain. People who reported more severe fibromyalgia symptoms, based on the Fibromyalgia Impact Questionnaire, had greater abnormalities in cranial blood flow.
Significantly, researchers say levels of abnormal blood flow were not linked to anxiety and depression.

This study provides further evidence that fibromyalgia is a physiological disorder and that's it's based on neurological dysfunction. Researchers say the findings could be used in clinical trials to better gauge the effectiveness of treatments. It also could be used to confirm the severity of the illness and may someday lead to an objective diagnosis of fibromyalgia."

The evidence is piling up!

Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms

Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms: "Imaging scans called magnectic resonanace diffusion-tensor imaging (MR-DTI) and magnetic resonance imaging of voxel-based morphometry (MR-VBM) showed what researchers call a 'striking pattern of changes in brain morphology' in people with fibromyalgia (FMS).

In this study, abnormal brain morphology (form and structure) was detected in multiple regions of the brain. Changes detected with MR-DTI correlated with pain intensity, fatigue, self-perceived physical impairment, and stress symptoms. MR-VBM measurements didn't correlate to symptom intensities.

Researchers concluded that MR-DTI may support a diagnosis of FMS and possibly of similar pain syndromes as well."

Genetic factors may help to identify Fibromyalgia

This reads like a huge break through but will such tests and the aknowledgment of physical basis for fibromyalgia filter down to the GP surgery level?

May genetic factors in fibromyalgia help to identify patients with
differentially altered frequencies of immune cells?

Clin Exp Immunol. 2008 Dec;154(3):346-52.

Carvalho LS, Correa H, Silva GC, Campos FS, BaiĆ£o FR, Ribeiro LS,
Faria AM, d'Avila Reis D.

Department of Morphology, Universidade Federal de Minas Gerais, Brazil.

PMID: 19037919

There is common agreement that fibromyalgia (FM) is an extremely
heterogeneous entity. Patients differ in their clinical symptoms,
endocrine and immune parameters. In this study we evaluated endocrine
and immunological features of distinct subsets of FM patients.

In contrast to previous attempts to identify subsets of FM patients,
based solely on their psychological and cognitive features, herein we
propose to separate FM patients by genetic features. Allelic
expression of the polymorphic promoter region of the serotonin
transporter (5-HTTLPR) was analysed as a relevant genetic factor for
FM. Seventy-five patients meeting the American College of
Rheumatology criteria and 27 healthy age-matched controls
participated in this study. All controls and FM patients were
submitted to genotyping of 5-HTTLPR. Twenty-seven FM patients, who
were able to discontinue hypnotic, sedative or psychotropic
prescription medications for at least 2 weeks, were then subdivided
into L (homozygote LL) or S groups (genotypes LS and SS). They were
evaluated for salivary cortisol levels, absolute number of leucocyte
subpopulations, including natural killer (NK) cells and activated T
and B lymphocytes.

Both groups presented decreased cortisol levels, more intense in the
L group, increased all B lymphocytes subsets and reduced
CD4(+)CD25(high) T lymphocytes. The L group had increased
CD4(+)CD25(low) activated T lymphocytes, while the S group displayed
elevated CD4(+)human leucocyte antigen D-related (HLA-DR)(+)
activated T lymphocytes and decreased NK cells.

We demonstrate that genetic factors may help to identify FM
individuals with differentially altered frequencies of immune cells.