Prof. VanNess on recent press reports

Recent media headlines would have us believe that "fear of exercise" hinders our treatment.  The papers have each taken slightly different but equally damning headlines:

"Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - Study" The Guardian
"Chronic fatigue syndrome sufferers 'can benefit from exercise'" The Independent
"Exercise can help with ME, scientists say" BBC
"Sufferers of chronic fatigue syndrome ‘can benefit from exercise’" The Irish Independent
"Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition" Mail Online
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph

What is written behind the headlines is no better.  Patients were understandably outraged!  

The Newry and Mourne ME Fibromyalgia Support Group have spent much time and effort trying to ensure that medical professionals understand the real physiological problems that ME patients have with aerobic exercise, and less than a year ago Prof. Mark VanNess eloquently explained these problems to a packed house in Stormont, Belfast. (More detail here)

Joan McParland (founder and co-ordinator of the Newry and Mourne Group) therefore wrote to Prof. VanNess to ask for his response to the these press reports.

The group are delighted that Professor Mark VanNess has agreed that we can share his response.  We certainly hope it will help clear up any misunderstanding about exercise for ME patients.  His letter is quoted below:


"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"


From Workwell Foundation

"Professor Mark VanNess received his doctorate in neuroscience from Florida State University in 1997 and did post-doctoral work in the department of pharmacology at the University of Texas Health Science Center at San Antonio. He teaches classes at the University of the Pacific in the College of the Pacific and College of Engineering in the areas of exercise science, nutrition and biology. He began working on CFS in 1999. His main research interest is on the role of the autonomic nervous system in immune dysfunction. He has a particular interest in the mechanisms that produce post-exertional malaise in women with CFS, especially as they contribute to physical and cognitive dysfunction."


Further information:

SUPPORTING STATEMENTS NOW RELEASED
From Dr William Weir FRCP  
From Dr Jonathan Kerr

Also from Judy Mikovits: 

These latest press reports are based on information from the PACE trial that has been widely discredited in ME circles, not least because the patients studied were selected only for generalised fatigue and therefore the majority would not fulfill ME descriptors.
A response from Invest in ME to the reporting by the BBC
Dr Malcom Hooper's response to the original PACE trial.

Link to the paper in the Lancet, on which the current media reports are based: "Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial"

BMJ "Tackling fears about exercise is important for ME treatment, analysis indicates"
Rapid Responses page on BMJ regarding this work here.

Interestingly one of the co-authors of the latest paper came to an entirely different conclusion in 2005: "Is the chronic fatigue syndrome an exercise phobia? A case control study." Where the conclusion reached was: "The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia."

Video of Professor VanNess speaking in Bristol last year.  He travelled to Bristol after the events in N.Ireland and this is essentially the same talk as he gave in Belfast.

And my own analogy: 

Click to enlarge

PS - Two comments below from Penny Swift included here so links to her articles will work:

"Our online report on the study can be seen at http://theargusreport.com/mecfs-research-uk-slams-lancet-psychiatry-report-advocating-exercise-for-chronic-fatigue-syndrome-sufferers/ Comments on the article are welcome. Let's spread the word."

"I have written another article and have credited your blog and the learned prof. http://theargusreport.com/us-neuroscientist-says-exercise-is-a-noxious-stimulus-that-worsens-symptoms-of-mecfs/ "

PPS - My apologies for earlier referring to Professor VanNess as Dr VanNess.  Correction now made.