Mail on Sunday, 23 September, 2018.
In yesterday's Daily Mail, in the regular “Ask Dr Ellie Cannon” column, a question was featured about M.E.
Dr Charles Shepherd has responded with the following information to Dr Cannon, hoping this might provide her with more accurate information and a better understanding of the disease.
We hope that she might also attend the Royal College of General Practitioners (RCGP) conference next month where presentations will be made about M.E. in a special workshop.
“I have recently been diagnosed with ME. How long must I put up with this fatigue?”
Dr Ellie Cannon replied:
“ME, now more commonly known as chronic fatigue syndrome (CFS), may arise after a period of physical or mental health problems, or even without prior warning.”
“Putting a timeframe on the condition is difficult but one study suggests about 40 per cent of sufferers improve after five years.”
“Treatment can be beneficial but will not offer a cure.”
“Many experts now think CFS stems from problems with the nervous system. It is not uncommon for people to suffer fatigue after a virus or illness. But no conclusive link has ever been found.”
“The most important thing is to get a GP referral to the nearest CFS clinic. Sleep, rest and relaxation techniques are also incredibly important.”
“Graded exercise therapy is the mainstay of CFS treatment.”
“This involves a programme of activity tailored to suit an individual and should ideally be under the supervision of a physiotherapist or occupational therapist.”
“In trials, cognitive behavioural therapy has been shown to be effective. It’s also important to note that before CFS is diagnosed, tests must be carried out to rule out the other common causes of fatigue.”
Dear Dr Cannon,
Re: Mail on Sunday: I have been diagnosed with M.E. How long must I put up with this fatigue? 23rd September 2018
From what you say in your reply about ME/CFS it appears that you are not up to speed with some key parts of the debate into both causation and management of the disease and may have relied on what is now outdated information in the 2007 NICE guideline on ME/CFS.
I would like to make the following points:
- The observation on the lack of evidence for the role of infection in relation to ME/CFS is incorrect. There have, in fact, been a number of good quality research papers published relating to the role of various specific infections as trigger factors (e.g. giardia, EBV). This research is summarised and referenced in the Research section of the ME Association clinical and research guide for doctors and allied health professionals (see below).
- NICE has accepted that the current guideline is not meeting the needs of people with ME/CFS, especially in relation to the use of CBT and GET, and the clinical guideline is being rewritten with publication expected in 2020.
The ME Association submission re: the NICE scoping document – a vital part of the review process – is where we are calling for the removal of GET from current ME/CFS clinical guideline: - There is widespread concern amongst both doctors and allied health professionals about the current NICE guidance on CBT and GET. Patient evidence has consistently indicated that CBT is not an effective form of treatment for ME/CFS (although it may help some people to cope with some aspects of having a long-term condition) and GET causes a worsening of symptoms in more than 50% of people.
Summary of patient evidence obtained by the ME Association on CBT, GET and Pacing. Pacing remains our recommended approach to management for ME/CFS. - There is strong and emerging research evidence from both here and the USA to indicate that there are significant defects involving both mitochondrial function and cellular energetics in people with ME/CFS.
Recent paper from Tomas and Newton on cellular bioenergetics and ME/CFS. - Research presented at the CFS/ME Research Collaborative (CMRC) conference in Bristol last week adds further weight to already published research that this disease involves an inappropriate and persisting pro-inflammatory cytokine response to a triggering infection. This low-level and persisting immune system activation may well play an important role in maintaining fatigue and ‘flu-like’ ME/CFS symptoms.
Videos and summary reports from the conference will shortly be made available on the ME Association website. - The idea that the exercise induced fatigue in ME/CFS is caused by deconditioning, and can be reversed by GET, is no longer tenable. Consequently, recommendations relating to GET from the Centres for Disease Control (CDC) in the USA have now been withdrawn.
A letter warning of the dangers of GET has been sent by researchers working on the cardiopulmonary exercise physiology of ME/CFS to health professionals. - The situation regarding prognosis is complex and research remains limited, but is perhaps best summed up by the following conclusion in the 2002 Report to the Chief Medical Officer:
“Although current research evidence on prognosis indicates that only a small minority of patients recover to previous levels of health and functioning, this finding must be tempered by the likelihood of selection bias in studies towards inclusion of those with poorer prognosis.”
“The likelihood is that most patients will show some degree of improvement over time. A substantial number of patients will pursue a fluctuating course with periods of relative remission and relapse, while a significant minority become severely and perhaps permanently disabled.”
“Gradual progressive deterioration is unusual in CFS/ME and should always prompt a further detailed clinical review to ensure that there is no other explanation that has been missed.”
“However, progressive deterioration can occur in some patients with CFS/ME; the existence of such patients, many of whom are among the more severely affected, must be recognised. Many need special attention in the delivery of care and the provision of support.”
I would be happy to provide more information on the current situation regarding both causation and management if this would help. And I will also send you a copy of the 2018 ME Association clinical and research guide if you would like one.
If you are attending the RCGP conference next month in Glasgow, Dr Gregor Purdie, Dr Nigel Speight and myself are presenting a Workshop on ME/CFS to cover early and accurate diagnosis, basic management in primary care, and children with ME/CFS. This will take place on Thursday afternoon at 4.00pm.
Regards
Dr Charles Shepherd
Hon. Medical Adviser, ME Association.
The ME Association
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Thank you to Dr Shepherd for an excellent reply.
Sadly I think the damage has already been done in yet another misleading article being published that diminishes the illness and reinforces the ‘exercise your way out of M.E. and think yourself better’ mantra.