25% ME Group response to NICE CFS/ME Judicial Review

25% ME Group Response to the ruling concerning the NICE Judicial Review into ME/CFS Guidelines

13 March 2009

This is certainly a very sad day for everyone with neurological ME.

A disease that devastates the lives of sufferers and their carers,
a disease that not only strips sufferers of their livelihoods, but that

often leaves them totally reliant on carers for their everyday needs.

I am also extremely worried where this will lead in relation to the so
called treatment therapies of Cognitive Behavioural Therapy and Graded
Exercise Therapy. These treatment s in many cases have caused wide spread
problems for ME sufferers. Our Report from 2004
http://tinyurl.com/25megroupanalysis see last page)

reported serious flaws in the therapies and also the fact that many
were not helped and a great deal more were harmed by undertaking
these programs. Many of these sufferers were not even severely affected
patients before undertaking the therapies!

We have previously quoted that these therapies are flawed when the NICE
Guidelines were released: “Patient experience of this serious neurological
illness, which affects up to 240,000 people in the UK has been all but
ignored in favour of a psychological approach. The illness affects many body
systems and their functions, and an estimated 60,000 develop M.E. so
severely they become bed or house bound, with others needing to be tube
fed”.

We stand firmly behind this today, especially in light of this court ruling.

The ME Association also recently undertook a wide scale survey that also
highlighted serious problems with these therapies “This is despite the
findings of the largest-ever survey of ME patient opinion carried out by The
ME Association last year which found that only 26% were helped by CBT –
while 56% reported that GET made them feel worse.”

We totally condemn NICE in the limited view that they have taken within the
Guidelines and feel that much research into neurological ME was sidelined in
favour of more mainstream therapies that are more suitable for patients with
totally different conditions (i.e. psychological , chronic fatigue etc.)

The 25% ME Group wishes to offer sincere and deep gratitude to the two brave
individuals who challenged NICE over these flawed guidelines by taking them
to court. Although, the case was lost it does highlight the serious need for
research into this disease and we hope that all the efforts to raise
awareness of ME will not be lost in this ruling and so we, along with other
individuals and like-minded charities who understand the consequences of
these flawed NICE Guidelines, will continue to campaign for them to look at
the real evidence concerning ICD 10 ME.

Chairman of 25% ME GROUP

www.25megroup.org
25% ME GROUP
21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org  

www.25megroup.org

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Ed: If your ME/CFS support group has issued a response and you would like this published on ME agenda, please forward a copy for publication.

 

Commentary from Louise Ellis |  13 March 2009

I agree that the CBT and GET section in the NICE Guidelines is a bad thing. However, I don’t believe that is the worst thing about the Guidelines. What bothers me more is the inadequacy of the section on pain relief and the fact that Neurally Mediated Hypotension and POTS are not mentioned.

NICE are preventing ME sufferers from receiving treatments that are effective in treating some of the symptoms of ME. There are ME sufferers out there who are in bad pain who need not be if NICE had a section on pain relief similar to that in the Canadian Guidelines.

There are ME sufferers who are largely housebound due to NMH and POTS symptoms who need not be if only the NICE Guidelines had covered this area. The Canadian Guidelines, have an excellent section on the topic. Dr Julia Newton’s work has proven that some people with ME need the tilt-table test and their quality of life could be greatly enhanced if they were treated for NMH and POTS. Incredibly the NICE Guidelines state that the tilt-table should NOT be given to ME patients.

I man the phone line for a Manchester support group and speak frequently to people with ME who have had long term pain. I often think to myself – why on earth have they not been offered such and such a drug? The answer I now know is because the drug is not in the NICE Guidelines. It wouldn’t be would it, with the Guidelines being written by those who believe ME is a psychosocial problem. I have NMH and POTS and have spoken to several PWME who have the symptoms of these conditions and probably thanks to NICE have never been offered a tilt-table test. It’s bad enough that PWME are suffering from untreatable symptoms but the fact that PWME are suffering from treatable symptoms is a disgrace and the NICE Guidelines are now a major cause of this state of affairs.

In light of the above it really is outrageous that AFME and AYME are backing and effectively rubber stamping the Guidelines.

Louise Ellis

Chair, Manchester ME Society

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