US neuroscientist says exercise worsens symptoms of ME/CFS

[Nielk]

http://theargusreport.com/us-neuros...ious-stimulus-that-worsens-symptoms-of-mecfs/

Excerpt

By PENNY SWIFT

A highly regarded American neuroscientist who has researched CFS for more than a decade, has decried media reports based on The Lancet Psychiatry’s recent scientific article that claims graded exercise therapy (GET) is an effective treatment for Chronic Fatigue Syndrome (CFS).

The Lancet Psychiatry report, published earlier this week, is the sixth based on the now dated PACE Trials that have been widely discredited by the international ME/CFS community.

Prof. J. Mark VanNess from the Californian University of the Pacific, referred specifically to The Lancet Psychiatry report’s claim that CFS patients have “fear avoidance beliefs” when it comes to exercise, and that this plays a role in “perpetuating fatigue and disability” in CFS.

In a letter published online in the popular Myalgic Encephalomyelitis blog, Just ME yesterday, Prof. VanNess said he was “saddened” by press reports that had appeared in leading newspapers including The Guardian, The Independent, the BBC, the Mail Online, The Telegraph, and The Irish Independent. “It seems to me they’ve once again missed important nuances of the disease.”

Prof. VanNess, who received his neuroscience doctorate from Florida State University in 1997, teaches biology, nutrition and exercise science at Pacific University. He is also committed to research on “the role of the autonomic nervous system in immune dysfunction,” and is particularly interested in “post-exertional malaise in women with CFS.”

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[eafw]

There's a good video on exercise and ME from Prof VanNess here

eta: he talks about "analeptic" exercise but doesn't give any particular examples. A quick search doesn't turn up anything useful either, so if anyone knows more about this would appreciate a link.

 

[charles shepherd]

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"