May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

Professor Wessely over a barrel?

Discussion in 'General ME/CFS News' started by Daisymay, Sep 24, 2011.

  1. Daisymay

    Daisymay Senior Member

    Messages:
    726
    Likes:
    3,955
    Professor Wessely over a barrel?

    Margaret Williams 24th September 2011

    On 23rd September 2011 in its News Focus, the journal Science published a chronology of events surrounding the putative relationship of a retrovirus with ME/CFS (False Positive; www.sciencemag.org), in which psychiatrist Simon Wessely was quoted: People will rather go over Niagara in a barrel than ever getting involved in CFS again.

    His statement is clearly contemptuous about everyone suffering from ME (known by him and his colleagues as CFS) and it seems designed to ensure that biomedical research into the disorder will not proceed. Such overt discouragement of urgently-needed research into ME is contrary to the basic tenet of medicine, which used to be: First do no harm.

    Professor Wesselys latest jibe illustrates exactly what should not occur when clinicians are dealing with sick and vulnerable people: The most shameful behaviour is to engage in a contest of meanings with a patient, denigrating or ridiculing what one does not agree with (Healing beyond the body Medicine and the Infinite Reach of the Mind; Dr Larry Dossey; Piatkus Books, 2002).

    Wessely certainly does not agree that biomedical research into ME is needed; he is well-known for his belief that ME/CFS is somatisation par excellence (J Psychosom Res 1994:38:2:89-98) and for his British Medical Journal podcast on 5th March 2010: Were not going to go doing more and more tests to find out what the virus was because, frankly, even if we found it theres nothing were going to do about it. Were in the business of rehabilitation (http://podcasts.bmj/2010/03/05.chronic-fatigue-syndrome).

    It is not surprising that Professors Wessely, Peter White and Michael Sharpe, all of whom were involved with the PACE Trial, are held in deep disregard by those whose lives have been wrecked by ME/CFS and who rightly are both exasperated and infuriated at repeatedly reading the inane description of their disease as fatigue, with some cognitive impairment, and perhaps a bit of depression thrown in for good measure.

    Each and every time that Wessely makes yet another denigratory attack on people with ME, there is a need for attention to be drawn to the reality of ME, which cannot be repeated too often. ME is not fatigue, accompanied by a few memory problems and depression, nor is it an aberrant illness belief that has resulted in reversible deconditioning, as the Wessely School maintain.

    ME is a devastating multi-system inflammatory neuroimmune disorder, with extreme malaise; nausea; abdominal pain and diarrhoea; frequency of micturition with nocturia; post-exertional exhaustion almost to the point of collapse; inability to stand unsupported for more than a few moments, sometimes being too weak and painful to walk; inability to walk upstairs or to maintain sustained muscle strength, as in brushing ones hair; inability to carry a shopping bag, or dry oneself after a bath, peel vegetables or prepare a meal, with recurrent mouth ulcers that make speaking and eating difficult.

    ME is neuromuscular in-coordination, not only of fine finger movement with clumsiness and inability to control a pen and to write legibly, but also of the larynx and oesophagus there is a need to swallow carefully to avoid choking, with oesophageal spasm and pain.

    ME is constant danger of falling because of balance disturbance (ie. dysequilibrium or loss of balance); staggering gait (ataxia); dizziness on moving, with episodic incapacitating vertigo; difficulty with voice production, especially if speaking is sustained; expressive dysphasia (inability to find the right word); muscle cramps, spasms and twitching and spasmodic trembling of arms, legs and hands.

    ME is frequent episodes of angor animi (brought about by abrupt vasomotor changes, when the heart stops beating then crashes furiously, causing difficulty breathing and uncontrollable shaking, and feeling that death is imminent); there may be an urgent need for oxygen.

    ME is photophobia; difficulty in focusing and in visual accommodation, with rapid changes in visual acuity; blurred and double vision; sometimes actual loss of vision; eye pain; swollen and painful eyelids, with inability to keep the eyelids open.

    ME is tinnitus and hyperacusis, for example the noise of a lawnmower can cause acute distress and nausea; heightened sensory perception (eg. acute sensitivity to being patted on the back; inability to tolerate lights, echoes, smells, movement, noise and confusion such as found in a shopping mall or supermarket without being reduced to near-collapse).
    ME is peripheral neuropathy; numbness in the face; parasthesias; altered sleep patterns, with hypersomnia and insomnia.

    ME is severe dysautonomia, including alternate sweats and shivers; temperature dysregulation, with intolerance of heat and cold; tightness of the chest alternating with a moist chest; breathing problems -- shortness of breath on minimal exertion; the need to sleep upright because of weakness of the intercostal muscles; pronounced cardiac arrhythmias; lack of bladder and bowel control; orthostatic tachycardia; orthostatic hypotension, with extremely labile blood pressure that is not amenable to therapeutic drugs.

    ME is intermittent palindromic nerve pains; muscle tenderness and myalgia, sometimes burning or vice-like; typically shoulder and pelvic girdle pain, with neck pain and sometimes an inability to hold the head up.

    ME is hypovolaemia, with blood pooling in the legs and feeling faint due to insufficient blood supply to the brain; there may be swollen feet and ankles.

    ME is intermittent crushing chest pain akin to a myocardial infarct; segmental chest wall pain; subcostal pain; vasculitic spasms, including headaches; cold and discoloured extremities, with secondary Raynauds Disease; easy bruising; peri-articular bleeds, especially in the fingers; leaking blood vessels; cutaneous vasculitis with rashes; flushing of the face (sometime just on one side); flushing and swelling of fingers and hands, with vasculitis of feet and (in females) the breasts.

    ME is pancreatic exocrine dysfunction leading to malabsorption; reduced liver function and demonstrable adrenal insufficiency.

    How Wessely could possibly justify encouraging scientists not to engage with such a devastating disorder is incomprehensible, yet he has been taunting and ridiculing patients with ME for years, denying their illness (Susanna Agardy; Co-Cure EDU: 25th August 2011).

    The first tenet of medical research used to be that it was necessary to have as homogeneous a cohort as possible, this being another tenet that seems to have vanished witness the moving of goal posts by the Wessely School.

    For example, contrary to accepted scientific practice, the PACE Trial Investigators deliberately chose broad entry criteria which included people with psychogenic fatigue, idiopathic fatigue and fibromyalgia quite different disorders claiming that they were all manifestations of medically unexplained fatigue, despite the fact that the trial purported to be studying those with the discrete disorder CFS/ME.

    Deliberately to broaden entry criteria for a clinical trial to include patients who do not have the disorder allegedly being studied contravenes elementary rules of scientific procedure.

    As noted by others: Mixing in people who do not have a disease with patients who do confounds the results and conclusions of any study regardless of the disease or disorder being studied (Kelly Latta; Co-Cure RES; 15th September 2011).

    However, having claimed for many years that ME, CFS, irritable bowel syndrome, fibromyalgia, hyperventilation syndrome, atypical chest pain, tension headache, pre-menstrual syndrome, globus hystericus and multiple chemical sensitivity are all one single functional somatic syndrome, those same PACE Investigators are now on record saying something rather different.

    A recent article by BBC News health reporter James Gallagher says: There is emerging consensus that CFS/ME is not one illness; Professor Peter White is on record in the article stating: Most specialist doctors (there are no specialist NHS doctors in the UK apart from psychiatrists) and scientists agree that it is more than one illness. It may be three to five separate illnesses, whilst his co-Principal Investigator, Michael Sharpe, is now saying: The concepts of CFS and ME have been conflated as CFS/ME. That may be right but it may be a bit like an apple/banana we need to be clearer what we are talking about (http://www.bbc.co.uk/news/health-14883651).

    That is precisely what biomedical scientists and patients with ME have been saying for decades. The PACE and FINE Trials have shown that the business of rehabilitation is unsuccessful. Is it not time for the Wessely School to leave the field entirely and encourage new approaches based on hard science rather than psycho-speculation?
     
    Merry and Wonko like this.
  2. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    66
    Ottawa, Canada
    Alleluia! This is EXACTLY what ME is.
     
  3. Esther12

    Esther12

    Messages:
    8,454
    Likes:
    28,553
    I thought something similar when I read the BBC article... shame it took two wasted decades.
     
  4. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    This is so well written. Where did you find it? Is it a published article? I hope so.
     
  5. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    Waste of a perfectly good barrel

    Anyone willing to look beyond the body of evidence and blindly jump right in to Simon Wessely's barrel would be doing nothing more than wasting a perfectly good barrel.
     
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    He hasn't even the courage to look ME and it's history/scientific findings over decades in the face for what it really is, or join all those at the ground breaking Ottowa Conference. No of course not - he would be shown up as the idiot he is.
     
  7. LaurelW

    LaurelW Senior Member

    Messages:
    584
    Likes:
    210
    Utah
    Dumb question: if Wessely would rather go over Niagara in a barrel than study CFS patients again, why does he keep publishing on this very subject? :-D
     
  8. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    66
    Ottawa, Canada
    I'm sure the reason is somewhere amongst this list. It's because he suffers from... (Pick one!)
    http://en.wikipedia.org/wiki/List_of_mental_disorders
     
  9. Wonko

    Wonko Senior Member

    Messages:
    1,419
    Likes:
    4,606
    The other side.
    can't we all chip in for the barrel?
     
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,520
    Likes:
    16,575
    I'd rather go over Niagara in a barrel than ever again relying on the biopsychosocial CBT/GET approach to help me or ever agree to have it enforced on the ME/CFS community.

    As for Margaret Williams' article:

    Peter White may view CFS as heterogeneous but "homogeneous when considering treatment" ie CBT/GET:

    Regarding XMRV, notice the total lack of news media coverage whenever pillars of the CBT/GET approach like "GET reverses deconditioning" and "CBT leads to increased physical activity" are discredited.
     
  11. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    I think he's going to Iraq and Afghanistan, because he said he feels "safer" there than anywhere near anyone of us *dangerous* ME patients.

    "I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones," he said. "That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer and I don't mean that as a joke." SOURCE:http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

    We can only dream that he never comes back.
     
  12. mellster

    mellster Marco

    Messages:
    804
    Likes:
    189
    San Francisco
    Was thinking the same thing - things like ground zero syndrome or whatever is was called are simply appalling. We should send Wessely to any post-destruction rubble cleanup work all around the world - he will never need any medical attention since it's all mental ;)
     
  13. sianrecovery

    sianrecovery Senior Member

    Messages:
    814
    Likes:
    649
    Manchester UK
    As someone trying to recover from ME in the UK, its hard to overstate just what a profoundly negative effect that particular cabal of psychiatrists have had in terms of both research and treatment for ME in the UK. Anyone brave enough to say the emperor's not very new CBT clothes are non-existent risks being demonised by the medical profession and investigation by the GMC. Its a shameful picture.
     
  14. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Yes I agree - and that this cabal have used the power of the Press to demonise all with ME by implication ....... well there are just no words to describe this behaviour from supposed medical professionals.
     
  15. New series on BBC about the UK's bomb disposal squads in Afghanistan...very good but harrowing stuff
    Again, to suggest Afghanistan/Iraq is safer than here is digusting bullshit.
    Yes, Wessely may get verbal dog's abuse, which isn't nice for him to live with to be honest, even if we believe he deserves a fair deal of it, but it's miles away from getting your limbs blown off by IEDs and RPGs.
     
  16. allyb

    allyb Senior Member


    Quite frankly, I feel much safer when Wessley is in Afghanistan, Iraq or anywhere far far away. The trouble is, he does keep coming back here, to create another war zone with his sniping at the already sick and wounded, then he retreats into victim mode when challenged.
    Maybe he should try some of his own prescriptive medicine.... a dose of CBT to address his own twisted thinking and change this 'unhelpful behaviour pattern.'
     

See more popular forum discussions.

Share This Page