Comments on the official NICE Guidelines for CFS/ME

Martin	17 Oct 2007
It is unclear whether their is an organic cause to M E. Failure to establish a concrete diagnosis does, however, remain a failure of the medical profession and not a desire of sufferers to remain poorly. Thousands of Lyme disease sufferers remain undiagnosed for years-or even life, they have a clear organic cause but the medical profession cant be bothered to find it. the same is likely to be true for most M E sufferers. What is needed is a more sustained effort and far more integrity on behalf of the doctors, -not a blame culture as proposed by the (not so) NICE budget appeasers. Martin

Joss	26 Aug 2007
Good things in the NICE guidelines... "Healthcare professionals should be aware that - like all people receiving care in the NHS - people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care. "   Joss

Rosie	22 Aug 2007
On 22nd August (2007), the day on which the appalling NICE Guidelines have been published, I just want to congratulate all at Invest in ME for the excellent DVD of the recent Conference. If only the representatives of NICE had bothered to attend and take note, if only the nay sayers who extol the psychosocial paradigm could have the integrity to listen to a much more persuasive argument, then we as sufferers of many years or many decades standing, might be experiencing a much happier and healthier state of affairs now. Let's hope that the call to arms opined by many of the speakers who gave their time and wealth of knowledge at the Conference can now be realised in terms of pressure from those who truly understand this illness to ensure a volte-face by those who pretend they do yet are blinkered by their own egos' and self satisfied aggrandisement.

Jacqui	13 Nov 2006
Dear IIME I have had ME 20yrs, now 64yrs old, and have never come across so much disbelief, rudeness and  incompetence.  Even though I had previously had Asthma since the age of 7yrs, been admitted to hospital 3 times, at death's door and was lucky to pull through, taken 3/4 different drugs/inhalers, brought 4 children up and worked until 45yrs. When I went down with ME I was removed from three doctors' panels because I would not accept that my illness was 'all in the mind' and refused to take tranquillisers, I was sick not depressed! I have had some terrible things said and written about me such as, 'This obese women came to see me with a bundle of papers on ME.' (I had been prescribed Steroids for 40yrs on and off) 'I don't know what you want to prove you have ME as there is no cure'. Wasn't the doc admitting there was such an illness? I have written to MPs, PMs, Health Dept etc, help set up local ME group but I am now getting both angry and disillusioned at the whole carry on. I am thinking of seeking legal advice at the way I have been treated. Regards, Jacqui

Joan	13 Nov 2006
I was very shocked indeed to read the draft NICE guidelines. I applaud IiME for there response. I hope that sense will prevail, however I do agree with IiME that legal representation may well be the only way forward. Sad as this is, it may well be the only logical thing to do, as those who have written this draft guidance appear to be blind to the biomedical evidence and out of step with their peers and contemporaries in other countries, including the US and Canada. Please keep pushing for these guidelines to be entirely scraped or re-written in entirety. Throughout the document it reads as though ME/CFS is an illness of choice. Having had the illness for 9 years I have yet to meet one person who did not hate every day that they had to suffer with this illness. These guidelines will serve to reduce support from the medical profession not enhance it. It will pander to those GPs and other health professionals who still insist that ME/CFS does not exist or is psychologically based. Those with ME/CFS need not just medical support and empathy but also social support, for both the sufferer and their carer(s). These guidelines and their moralising tone will ensure what pitiful services currently available will likely be reduced and alternatives like GET will be thrust upon patients. If the patient fails to recover then the patient will be blamed for not trying hard enough. Well, enough is enough. Both morally and ethically NICE need to raise their game.

Peter	12 Nov 2006
Absolutely Brilliant! Well done to all concerned. Beautifully written and soundly reasoned. A huge contribution to people with M.E. Thank You

Niccola	12 Nov 2006
I have had ME for 11 years now, and have been lucky that I have not been forced on to a CBT and GET programme. Everything I have read about the NICE guidelines shows that the psychiatric/ psychology brigade have a tight hold on what NICE are taking on board. As the majority of ME sufferers know CBT and GET are not a cure for this illness and there is evidence that it does not work and leaves the patient worse off than before they embarked on these programmes. What worries me is the fact that they are not taking on board what many of the stakeholders like your selves, that they have already made up their minds that the psychiatric/ psychology brigade are right here. It will also have a knock on effect for PWME getting the benefits they need, as it is I have applied for DLA 3 times and have been turned down 3 times. The doctors who come out to do the medical appear to have little or no knowledge of the disease, and I have found the same when I have got to the tribunal stage. Please keep fighting for what PWME really need, which is training the medical profession and the benefit agency on what this illness is really like, with the neurological symptoms and the relapses that are caused when too much is done which often does not occur until 24 to 48 hours after the event.

 

Nancy	11 Nov 2006
I agree wholeheartedly with the contents of your response to the NICE guidelines. In addition, can I offer these thoughts. My daughter with ME has engaged in all of the "management" techniques recommended. She is still just as ill as ever. According to the guidelines she must be a bad patient or hasn't tried hard enough! The recommendations do not brook "failure to improve" and appear to give GP's and others a recipe for guaranteed success. So what happens when things get worse or do not improve? At the least there should be a list of contraindications as for any prescription. As written, I would expect a course of GET or CBT would not be suspended if the patient deteriorated, they would be told to try harder. I am also very concerned about the review schedule for guidelines as the pace of change with research now underway internationally is really speeding up. I own a copy of "Women's own Book of the Home" from 1931. In the Meningitis section it states, "It is also sometimes caused by children paddling in the hot sun without hats." Treatment recommends ice-bags, castor oil, milk and beef tea. Have we moved on from 1931? How quickly did the medical profession accept new research and treatment methods? It is terrifying to think how long that book would have been used for reference. The guidelines are out of date before they have been published. People with ME are better off with no guidelines than with the modern-day equivalent guidelines suggesting beef tea for ME!

T.	11 Nov 2006
Thank you for the opportunity to comment on the guidelines: or misguidelines! I had a major panic attack the other day when I reached the first paragraph of the short version.  There was no mention of neurological symptoms in the introduction which was strange as ME is a neurological disease and it was then confirmed to me that these shoddy guidelines were written by someone who had no knowledge of ME or was cynically manipulating the situation whereby there would be no treatment: therefore no cost.  It was, unfortunately no surprise to me that this was so as the review of the evidence was partially skewed to CBT and GET.  Excuse me, but do people with MS have this sort of indignity thrust upon them.  It is strange that such ignorance persists at the same time as the US CDC has just stated that there is now so much new scientific evidence that there is clear evidence that ME is a physiological disease and they have implicated the Genes and HPA axis.  Go to www.scencedaily.com click on medical conditions and scroll down to the article “CDC Chronic Fatigue Syndrome. I have been severely affected by GET which appeared to be a wonder cure: at least initially.  No amount of exercising would make me walk as my legs just don’t work.  Probably cerebellar damage. I find it very insulting that there is a thread, throughout, that people with ME have some false illness belief and “want” to be ill.  I was a newly promoted Lieutenant Colonel in the Army when this struck me down, and now have an 80% war pension.  I was hospitalized with the virus and my condition has steadily deteriorated over the past 20 years.  Ironically I was invalided from the army for depression but 10 years later it became apparent that there was much more than depression: mainly reactive to the lousy treatment by the Army doctors anyway.  My pension was then rewritten to show the initial viral infection in 1985 and then ME from 1994.  Should have been 1985 really but so what.  Incidentally I tried to train as a nurse and set up my own woodworking business, besides renovating 2 houses within the 10 years before proper diagnosis by a professor at Bath.  The consequence of all this effort is, of course, severe ME.  People with ME do, very often, need counselling because as you will know only too well this is an illness that can take away everything and more so everybody.  Add to this awful treatment by the medical profession, and draft NICE instructions, and you have a form of PTSD.  This is not the original ME though.  How are hard pressed PCTs who cannot treat other clients who need CBT to fit everybody in?  It’s bonkers and unaffordable.  One cannot help but think that it is just a cynical ploy and that NICE knows very well that there will be no treatment as the system cannot cope. There seems to be no effort to treat the pain side of the illness.  I take a cocktail of Pregabalin for nerve pain and ANS symptoms which are predominant in my case plus Voltarol and Solpadol for joint and nerve pain.  Pain is a major problem for many but this does not seem to be addressed.  In fact I would not recognize from the guidelines the illness I have and I can’t help think that it is because the author is prejudiced and thinks ME is a psychological illness. They seem to have widened the scope and turned it into a dustbin for all illnesses which include unexplained fatigue. This will do no end of harm to patients in their treatment and individuals who need benefits: as if it was not so difficult already. Finally I find it totally and utterly exasperating that such persistent ignorance, prejudice and incompetence can be allowed to occur in NICE when the scientific evidence, at last, is proving the physiological basis.  It has repeatedly put out guidelines for other illnesses such as cancer, MS, and Alzheimers which have infuriated the patient groups because they are illogical and inappropriate.  What is more infuriating is the supreme arrogance with which they ignore the views of those who actually suffer which make an utter mockery of our involvement as stakeholders.  Either NICE is staffed by particularly inept individuals or this is a deliberate strategy to save money: rightly earning its nick name as the Institute for Curbing Expenditure! Sorry to rant but I am just so disappointed that, again, we are to be cheated of the recognition people with ME deserve.

Bernard	10 Nov 2006
Just like to wish you success with your reply to the NICE guidelines, I have had a brief look at your reply but have found it to hard to really get into it. I have had ME for 7 years now and have been through the mill of get and CBT and neither of them have helped me one bit. I find it very hard to concentrate for long periods so find myself relying on people like yourselves to do the groundwork on these sort of things, I live in hope that nice will listen to what people are saying, but I must admit that I feel the psychs have to strong a hold on what the outcome will be.

Judy	10 Nov 2006
I am an M.E sufferer who has made a remarkable recovery and it certainly was not brought about by CBT and graded exercise - quite the opposite.   If I have made  errors along the way, I would say it was being treated with anti-depressants and trying to exercise in the early stages