ME Association Press Release: People with M.E. ‘measurably more disabled’ than people with Multiple Sclerosis

I hope the media pick this up and publish some good articles.
I am concerned by this line in the Press Release:
It used blood samples donated by M.E. and MS participants to the UK ME/CFS Biobank in London, and also assessed how their illnesses affect areas such as employment and income.
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Yet the study itself says:
Methods
In this cross-sectional study, we used data collected as part of the UK ME/CFS Biobank to compare actual participant scores from the Medical Outcomes Survey Short Form-36 v2™ (SF-36v2™) between groups, as a proxy for impact of disability, and from a bespoke questionnaire seeking data on employment and income.
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In other words, the study was entirely based on the questionnaire data from the Biobank participants, not on their blood samples.

@Russell Fleming
 
Trish said:
I hope the media pick this up and publish some good articles.
I am concerned by this line in the Press Release:


Yet the study itself says:


In other words, the study was entirely based on the questionnaire data from the Biobank participants, not on their blood samples.

@Russell Fleming
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Thanks Trish. Slipped through my radar - little bugger. Corrected now :)
 
Jo Best said:
Shouldn't this say part-funded? How much funding has been contributed by MEA and other charities and funders?
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The ME Association has been funding the biobank on its own for several years now. Initially there was joint funding but once it became established the others pulled out. We've just agreed further funding for another two years.

This is all separate to the NIH grant(s) which are for specific research projects - e.g. the longitudinal study etc.
 
I've been unsuccessfully trying to get my HMO to recognize the need for an ME/CFS specialist, just as they have many MS specialists.

Based on prevalence figures, my HMO should have over 50,000 ME/CFS patients. No specialist.

I will show them this article/study. Perhaps it will make a difference.

ETA: I just received a letter stating that my request for ME/CFS specialist care will be considered by a committee. I've attached links to the study and ME Association article to my request as supporting evidence.
 
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Thread merged

"A misunderstood disease wrongly labelled make-believe by some GPs is more devastating to sufferers than multiple sclerosis, a new scientific study has found.

More than 250,000 people in the UK have ME (myalgic encephalomyelitis), which manifests as unrelenting fatigue and profound pain. The condition, also known as Chronic Fatigue Syndrome, has no known cure and is made worse by exertion.

Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, days, weeks or longer.

But, despite the illness being recognised as a neurological condition by the World Health Organisation, patients are often branded hysterical, hypochondriac or even lazy. Many ME sufferers report having to give up employment and tell of a struggle to obtain benefits.

Now a study shows that people with ME can be more disabled than those who suffer from multiple sclerosis, a similar but recognised illness that affects more than 100,000 in the UK."

rest of article here:
http://www.ekklesia.co.uk/node/25434
 
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