Graded Exercise Therapy for ME/CFS: ineffective at best, harmful in reality
Posted on July 21, 2015
Miak Speedy, MD
Family Physician
Conflict of Interest:None Declared
Smith et al. concluded that “trials of ... counseling therapies, and graded exercise therapy suggest benefit for some ... whereas evidence for …. harms is insufficient.”(1)
As a doctor, bedridden with ME for over a decade and totally dependent on others, all thanks to a major relapse caused by Graded Exercise Therapy (GET), I'm in a unique position to answer how harmful GET and CBT really are. The basis of GET and CBT is false illness beliefs, meaning it is all in the mind, ignoring all the evidence, for example intracellular immune dysfunctions, which not only restrict exercise capacity, but are also made worse by exercise [2], that this is a physical disease.
ME's main characteristic is an abnormally delayed muscle recovery after doing trivial things, not chronic fatigue, and GET and CBT force you to ignore your symptoms to exercise your way back to full fitness. If you do that, you go over your limit, causing a relapse, and the more you go over your limit, the bigger the relapse and the less likely you are to recover from it.
Many ME patients have been made homebound/bedridden, the result of a major relapse caused by GET and we will only get our health/independence back if we get proper medication.
The Norwegian Rituximab studies suggest that ME is an autoimmune disease and 2/3 of responders are still in remission at the 36-month follow-up. [3] The ME Association recently published a big study, concluding there's no role for CBT, which increases the risk of making things worse, and GET is harmful and should be withdrawn immediately. [4]
Falk Hvidberg et al. recently found that ME/CFS patients have the lowest health-related quality of life of 21 conditions looked at, which included chronic renal failure, strokes, lung cancer etc. [5]
In reality, only two sorts of ME patients can do graded exercise therapy. A small minority where the disease is in remission, and "ME" patients were the diagnosis is wrong.
In all other ME patients, GET causes severe relapses and BREACHES the do no harm principle of medicine.
The alarming findings by Falk Hvidberg et al. [5] show that CBT and GET, tried by most ME patients, are not effective, and that there is an urgent need for effective medication for this debilitating disease, so that we get our health and independence back, can come off benefits and go back to work.
References:
1. Smith MEB, Haney E, McDonagh M, Pappas M, Daeges M, Wasson N, et al. Treatment of myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review for a national Institutes of Health pathways to prevention workshop. Ann Intern Med 2015; 162: 841-50.
2. Nijs J, Nees A, Paul L, DeKooning M, Ickmans K, Meeus M, et al.
Altered immune response to exercise in patients with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic literature review. Exerc Immunol Rev. 2014;20:94-116.
3. Fluge Ø, Risa K, Lunde S, Alme K, Rekeland IG, Sapkota D, et al. (2015) B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment. PLoS ONE 10(7): e0129898. doi:10.1371/journal.pone.0129898
4. ME Association, Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS, 29 May 2015,
http://www.meassociation.org.uk/2015/05/23959/
(accessed 18 July 2015)
5. Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (2015) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS ONE 10(7): e0132421. doi:10.1371/journal.pone.0132421