The FINAL TOTAL for the petition was 13,593! Thank you to everyone who added their name and left comments. We'll now collate the responses and Dr Shepherd will hand the results to Sir Andrew Dillon at NICE.
The ME Association has today launched a new petition against NICE and its proposed new guideline on suspected neurological conditions: M.E. is not a functional disorder.
New NICE guideline: suspected neurological conditions
The new guideline is intended to inform all GPs and medical professionals how and who they should refer to neurology for specialist care. It is vital that we try and ensure the information it contains is accurate and does not exclude people with M.E. from having access to this medical discipline.
Overall, the new guideline is attempting to reduce the number of referrals to neurology by transferring them elsewhere, and it could leave people with M.E. abandoned by a discipline that should be welcoming them.
Our petition follows the submission recently made by Forward ME and is in complete support of their demands.
The suspected neurological conditions guideline specifically refers to M.E./CFS as a ‘functional' disorder, which it defines as being ‘driven by emotion' that, ‘may mimic physical disease'.
Despite NICE claiming its guidelines are based on sound research evidence, no such evidence exists or has been presented by the guideline development group to support the notion that M.E./CFS is a functional disorder.
Forward ME – of which the ME Association is a member – has called for all such references to be removed.
M.E. and CFS have long been recognised as neurological disorders by the World Health Organisation and this distinction has been confirmed many times by the Department of Health and UK Government, most recently back in July by Lord O'Shaughnessey in a debate with the Countess of Mar and Lord Hunt:
“Regarding the classification of chronic fatigue syndrome and myalgic encephalomyelitis, or CFS/ME, the Government accept the World Health Organization’s classification of the illness as a neurological condition of unknown origin.”
NICE guideline on M.E./CFS
The NICE guideline for M.E./CFS makes no mention of this disease being considered a functional disorder, or that it is considered to be caused by emotions, and we will do our very best to ensure that this remains the case while the guideline is reviewed and updated.
It was interesting to note, when documents relating to the ongoing guideline review process were released, that:
‘The Association of British Neurologists also takes an interest in [M.E./CFS] as one that is common, disabling and distressing and involves abnormal nervous system functioning.'
This comment seems rather at odds with what has been written about M.E./CFS in the proposed guideline on suspected neurological disorders.
The Petition
We want to give everyone the opportunity to demand that NICE remove all reference to M.E./CFS from the new guideline on suspected neurological disorders, and to claims that M.E./CFS is a ‘functional' disorder.
We believe that neurology should not be trying to reduce access to its' medical experts, but should be welcoming and supporting people with this disease. We need help, not disdain.
We need neurology to:
- help with diagnosis and management throughout the period of ill-health,
- provide reassurance and understanding,
- advise on the best course of treatment,
- be more involved with research into the biomedical nature of M.E./CFS
Please sign the petition and help us demonstrate to NICE that once again, we are not prepared to stand by while others make decisions about our healthcare without proper consideration and respect.
We will aim to close the petition on Wednesday, 11 October at 5pm.
Thank you.
CLICK HERE TO TAKE YOU TO THE PETITION!
Copyright: stokkete/123RF Stock Photo
… and just in case there are still any skeptics among you, here is a link to a list of 85 studies with abnormal neurological findings in ME/CFS. EIGHTY FIVE PAPERS!!
(It is part of the proposal by Suzy Chapman and Mary Dimmock for the ICD-10 G93.3 legacy terms for ICD-11 WHO classification for ME and CFS.)
https://www.dropbox.com/s/u0ynbse2xb2hao6/Reference%20List%20of%20Neurology%20studies%20%20ME%20CFS%202017.pdf
(The studes listed in red, were included for consideration in the recent the IOM report.)
The problem is that mental and functional illnesses also are marked by inflammation, so we will not win the argument on the basis of that alone. The psychiatric lobby will point this out all day long.
We need to point out, in turn, that recognised mental illnesses and illnesses labelled as functional are treated and researched in a variety of ways with considerable emphasis on the organic. We might also point out that CBT is less likely to be effective in depression in cases of greater preexisting neuroinflammation,
http://journals.sagepub.com/doi/abs/10.1177/0004867417701996
Why relegate the organic to a sideshow in CFS/ME if this is not done in mental or functional illness anyway? Inconsistent.
Our symptoms are physical yet no one is being diagnosed on the basis of neurological investigation or 2 day exercise tests.
Sadly, besides lack of money, the now unspoken ideas that we are “worried well” or will hang on to “illness roles” if given physiologically based diagnoses, still haunt the corridors of power and that is why the organic is so underemphasised. Ironically, of course, one can spend all one’s life in CBT, get nowhere and find that an excellent “illness role”. We must attack their inconsistencies.
If this new guideline had not chosen to specifically mention ME/CFS or indeed Fibromyalgia, had not chosen to posit a causation without evidence (that ME/CFS was ‘driven my emotions’, only mimicking physical disease), then the ME Association, Action for M.E. and Forward ME, may not have had as much of a problem with it. Of course, the new guideline also seeks to reduce the number of referrals to neurology, and that’s not good for anyone, but especially not for people waiting diagnosis or people with M.E. displaying new symptoms, or for whom a referral is necessary to ensure they don’t have something other than M.E. But aside from all that, is the classification of ME and CFS as neurological disorders by WHO and the acknowledgements of this from UK Govts. Until such time as research can establish more credible cause(s) then we really need to rally behind the current one. M.E. is not a functional disorder – and certainly not on the basis of what is written in this new guideline.
In over 40 years, I’ve never been offered a referral to a neurologist for my ME. I was packed straight off for a thorough neurological investigation when my GP noticed the pseudo-parkinsonism that’s CAUSED by my ME, but never for the ME itself.
This is a major problem now that the social security system demands medical evidence in order to access benefits. It’s all too easy for the DWP to assume that no consultant = no real illness. After all this time there’s probably very little a neurologist could tell me about ME that I don’t already know, and that’s no doubt why I haven’t been referred, but I’m extremely concerned that the fact my GP manages my illness will count against me when it comes to my PIP assessment.
People with other conditions that I share, including Ehlers Danlos syndrome, are having similar problems because of the ‘diagnose and discharge’ policy operated by rheumatology departments. The fact that patients were discharged years ago does not indicate that they no longer have disabling symptoms; it indicates that it’s a very difficult condition with few or no viable treatment options. The DWP, however, simply looks at the date on the last letter they received and dismisses their disorder as historic.
It feels very much as if there’s a concerted attempt by all parties to shut out sick and disabled people. Guidelines are drawn up that trivialise our illnesses, so we can’t access consultants for proper diagnosis and management, so we’re not entitled to benefits and allowances, and all the advice services that would have helped us appeal those decisions have had their funding cut. No wonder the UN is worried.