On-line submission from The MEA - awaiting BMJ moderation/approval:
The ME Association believes that energy management, which involves both physical and mental activity, is the most important aspect of managing ME/CFS.
Consequently, we welcome research which aims to improve our knowledge of how this can best be achieved.
Energy management programmes must be individually tailored. And they have to take account of the wide range of clinical presentations and disease pathways that come under the ME/CFS umbrella.
We are therefore very critical of over-simplistic exercise regimes which are based on deconditioning, fear of activity and the assumption that people just need to ‘try harder’ in order to get better. Many people with this condition are, in fact, performing at or near their maximum capacity. And some need to actually reduce their activity levels and stabilise their condition before starting any form of increase in activity levels.
In addition, the approach being recommended does not acknowledge the muscle, brain and immune system abnormalities in ME/CFS, which help to provide a physical explanation for the debilitating central (brain) and peripheral (muscle) fatigue that occurs in this illness.
Feedback from patients, who are not normally treated as part of research studies, consistently indicates that around 25% find exercise programmes to be of no value. Around 50% report that their condition worsens as a result.
So the real reason why cognitive behaviour therapy and graded exercise therapy are not producing significant benefits across the whole ME/CFS population is that they are based on a flawed model of illness causation. They are are not taking account of the medical complexities involved.
In our experience, patients with ME/CFS are highly motivated to get better.
They are very willing to take part in energy management programmes that establish a safe baseline of activity, take account of the stage and severity of their illness, involve increases in physical and mental activity that are gradual, flexible and do not result in the person going beyond their limitations and causing symptom exacerbation.
We fear that the way the results of this study are being presented in the media and in the medical press will be interpreted to reinforce the over-simplistic and misguided view that rest is bad and exercise is good for people with ME/CFS.
And without discussing the medical complexities involved, people are then led to the conclusion that any reluctance to progressively increase activity levels is far more related to fear or avoidance behaviour than any underlying disease process.
What we desperately need are high quality research studies that are aimed at producing a range of individual energy management programmes based on clinical presentation, stage, and severity of illness.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Update:
I cannot disclose everything that is 'going on behind the scenes' in relation to what has happened this week but as the correspondence from Professor Mark VanNess has been placed in the public domain on the NIMEA website, this is an email that I have just sent to Mark:
Dear Mark
I saw your excellent reply to Joan Mcparland on this subject on the Northern Ireland ME Alliance website.
The various points you have made would form a very helpful contribution to the rapid response debate currently taking place on the BMJ website:
http://www.bmj.com/content/350/bmj.h227/rapid-responses
And in the current absence of any robust evidence from replicated clinical trials that support the use of pacing, I think it would also be very helpful if a group of international physicians and researchers who do not agree with the GET treatment model could get together and produce a joint letter expressing our concerns.
We could also summarise the evidence that does exist (obviously including what your group have been doing with exercise physiology testing) in support of what almost all patients (and many doctors) believe: that pacing is a far more effective and safe method of activity and energy management.
Regards
Dr Charles ShepherdHon Medical Adviser, MEA
Letter to Joan Mcparland:
"Dear Joan,
I was saddened to see the press releases regarding the ME/CFS studies from Kings College London.
It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS.
Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial.
The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion.
Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case.
Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.
We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.
Good luck to you and your organization as you help us all accurately portray this illness.
Sincerely,
J. Mark VanNess, Ph.D.
Professor; Departments of Health and Exercise Science and Bioengineering
University of the Pacific
Stockton, California, USA"
