"Exercise Therapy/Psychotherapy not only ineffective, but potentially harmf

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Nov 13, 2009.

  1. QuayMan

    QuayMan Member




    A recent review of the relevant scientific literature shows that the
    "revalidation therapies" for patients with ME/CFS, which are monopolized by
    the governmental institutions for example in the UK, Belgium and the
    Netherlands, are not only not efficient, but also aggravate the condition of
    many patients.

    Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.

    ME/CFS is a debilitating disease, affecting many biological systems.
    According to the CDC, the level of impairment of ME/CFS patients is often
    comparable to that of patients with some well-known, very severe medical
    conditions, such as MS, AIDS, end-stage renal failure, and chronic
    obstructive pulmonary disease.

    There is now sufficient evidence that ME/CFS is a disorder that
    primarily involves an inflammation with dysregulated and suppressed
    immune functions, oxidative stress, infections, autoimmunity and
    mitochondrial dysfunction. During the last few years, many scientific
    including gene expression research, have confirmed that patients with
    ME/CFS suffer from the above organic disorders.

    Despite several major scientific breakthroughs, ME/CFS is still
    described in the popular media as a medically unexplained disorder.
    Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
    (GET) are declared to be the only possible therapies.

    A thorough analysis of the current medical scientific literature and
    international patient surveys, however, shows that CBT/GET is not only
    ineffective for the majority of the ME/CFS patients, but also potentially
    very harmful. Scientific studies and large-scaled patient surveys have shown
    treatments with CBT/GET seriously deteriorate the condition of many patients
    with ME/CFS. The work capacity decreased as well!

    The review also explains why GET and exercise do aggravate
    characteristic complaints, like “fatigue”, pain, neurocognitive problems
    (e.g. concentration and memory). Pre-existing biological aberrations, e.g.
    inflammation, oxidative stress, and dysfunctional ion channels, will be
    amplified by a minor exertion, like walking or reading a book … and by
    “rehabilitation therapies” like CBT/GET.

    The reviewers urge policy makers to change their policies drastically,
    by putting a stop to potentially harmful and ineffective "rehabilitation"
    programs, and investing into medical research and therapies targeted at the
    immune system, infections and other pathological aspects of this horrible
    /wasting disease.


    Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
    Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
    Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
    but also potentially harmful for many patients with ME/CFS. Neuro
    Endocrinol Lett. 2009 Aug 26;30(3):284-299.

    Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
    health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.

    Frank Twisk MBA BEd BEc
    Stichting ME-de-patiënten / ME-de-patiënten Foundation
    Zonnedauw 15
    1906 HB Limmen
    Nederland / the Netherlands
    Tel. +31-(0)72-505 4775
    www.michaelmaes.com (here you can download the full text)
  2. wendysj

    wendysj New Member

    Hi Quayman,

    I just left my Rheumies office. I asked her about excercising and she said I can excercise without hurting myself. (I have CFS, FM & RA.) She did say, however, that I need to be smart. If it's hurting me, stop.

    I feel like if the CFS isn't crazy bad and the RA isn't too bad, I can excercise a little with no problem. When the CFS is bad, I have a hard time holding a phone to my head.

    She concluded with a generic, take it easy and only walk for a few minutes everyday. We'll try more excercise if I can do that for the next few weeks.

    All that to say, I hope (if nothing else) all the these questions will be answered and written in stone for us with the new virus discovery.

    Thanks for posting this information. Very helpful!
  3. mbofov

    mbofov Active Member

    I have read where some people with fibro do better with moderate exercise.

    But I have CFS (no FM) and generally need all my energy do to the bare necessities - grocery shop (which takes a huge amount of energy), laundry when I can get to it, dishes, just keeping my house habitable (not clean). I don't have any energy left over for "graded exercise".

    When I was healthy, I could push myself when I got tired and do okay, but if I push myself now, I always crash and end up in bed. I've learned the very hard way that I have to stop doing things before I even feel tired in order to avoid crashing.

    I think a lot of this graded exercise/psychotherapy is promulgated by the same people who have denied the reality of CFS for the last 25 years. I asked one of my brothers about the medical establishment's denial of CFS in the face of overwhleming objective evidence to the contrary - and he thought insurance companies could be behind it to avoid paying disability claims. I just don't know, but it's the only thing that even begins to make sense. Unless being thickheaded and obtuse comes wtih the territory of gaining a position of power in the medical hierarchy.

    [This Message was Edited on 11/13/2009]
  4. wendysj

    wendysj New Member

    Hi Mary,

    I have CFS and FM. I was able to do moderate excercise at the beginning of the year for a few months when the CFS wasn't causing too much trouble. I think I had FM and CFS managed pretty well.

    Out of nowhere though, I got slammed back down to reality and could no longer do it. I want to excercise so much. You look and feel better! I'll keep trying little by little.

  5. mbofov

    mbofov Active Member

    I used to walk for hours every week before I got sick. I loved swimming too. I'd get up early and walk for a full hour before work. I loved it, I felt good, it kept my weight under control. I can't do it any more and miss it so much, like you.

    I know people who CAN exercise, they don't have CFS, and they just can't be bothered to do it. It seems to me like they have a great gift they don't appreciate one bit. It's not fair! But life's not fair anyways.

    It's good you were able to do moderate exercise at the beginning of the year. Maybe you'll get back to that point. I haven't been able exercise for 11 years.

    Hopefully with all this new research we'll be able to start getting our lives back!