The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

This doc GET it, he even CBT's it, wow!!!

Discussion in 'General ME/CFS News' started by heapsreal, May 29, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)

    Dr Nigel Speight:

    If there were a cure, there would be no controversy. Evidence for this is provided by the large number of severely affected individuals around the UK, most of whom have tried just about every treatment on offer, yet remain severely affected.

    In 2007, NICE Guidelines gave qualified approval to Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) due to limited evidence that they might be helpful in mild and convalescent cases. There is no significant evidence that they help severe cases, and plenty of evidence from the patient community that over-enthusiastic forms of GET can be positively harmful.

    The danger of doctors placing too much faith in the efficacy of these forms of management is that, when they fail to work, the doctor may start blaming the patient. They may say: this cant be ME/CFS because they are not responding to orthodox treatment and invoke a psychiatric diagnosis eg Pervasive Refusal Syndrome, abnormal illness behaviour, or Munchausen Syndrome by Proxy / Factitious Induced Illness in children. Alternatively, the family can be blamed for sabotaging the treatment, and their access to the child (if in hospital) restricted.

    This well-meaning but in my opinion seriously misguided belief system leads to the family being subjected to the juggernaut of Child Protection proceedings, which in the case of an already severely affected patient amounts to Child Abuse by Professionals.

    In the past one felt that once a young person reached 18 they were safe from these pressures but now the same sort of belief system is leading to an adult form of Care Proceedings. Using the Mental Capacity Act, the patient who declines treatment (typically, admission to a psychiatric unit) is said to lack capacity to make their own decisions. The spectre of Munchausen Syndrome by Proxy is invoked to deprive patients of their liberty on the grounds that they do not understand their own best interests.

    Perhaps the next version of NICE Guidelines should state loud and clear:

    There is no form of treatment for ME/CFS of such efficacy that it could ever justify a coercive approach.

    Once the limitations of GET and CBT are accepted, doctors can recommence their duty to support and care for their patients in a more humane way.

    Dr Nigel Speight
    Consultant Paediatrician
    Tymes Trust Professionals
    Referral Panel

    Professor Malcolm Hooper:

    GET is based on the theory that patients have just become unfit (deconditioned) -

    If the child doesnt fit the theory then the theory is wrong. In the severely ill, bed rest is not harmful and may be essential [...] Activity levels will naturally increase as the childs symptoms improve [...] Excessive activity can be harmful. (The late Dr Alan Franklin, Consultant Paediatrician).

    Papers that disprove the deconditioning theory in ME/CFS include (i) Scroop GC et al; Med J Aust 2004:181:578-580; (ii) Schmaling KB et al; J Psychsom Res 2005:58(4):375- 381; (iii) Newton JL et al; Q J Med 2007:100:519-526.

    Professor Malcolm Hooper
    Emeritus Professor of Medicinal Chemistry

    The Young ME Sufferers Trust
    Registered Charity 1080985
    Founder Patron: Lord Clement-Jones CBE
    0845 003 9002
    PO Box 4347, Stock, CM4 9TE
  2. kurt

    kurt Senior Member

    Syracuse, Utah, USA

    The problem I see is that doctors have difficulty making a differential diagnosis when they see chronic fatigue. There ARE people with chronic fatigue who benefit from conditioning, even though they may not be 'deconditioned' per se. However, if they still can exercise, and do not have the 'syndrome' level of CFS with the pathological detox, they may improve from conditioning.

    We need differential diagnosis, ways to tell apart the CF from the CFS patients, and ways to convince doctors they are failing miserably in differential diagnosis of the two conditions.
  3. Tulip

    Tulip Guest

    I had a cardiologist tell me just the other day that all my cardiac symptoms including chest pain were due to not doing high impact exercise and that it improves ME/CFS, even dismissing the fact that an ultrasound of my heart showed I had oedema :Retro mad:

    The majority of the medical world has gone mad. Thank god for these good doctors though :Retro smile:

    I wonder if more people launching legal action against such negligent "doctors" would send a strong message out that enough is enough? . The Wessely school is 100% to blame for this thanks to their "studies" of CFS/ME patients as they like to call it, who have absolutely no immune or neurological symptoms. Doctors some how need to be told about this.
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    all too true!
  5. Francelle

    Francelle Senior Member

    Victoria, Australia
  6. Enid

    Enid Senior Member

    Wouldn't it be nice if they could get the message out to all the "misguided".
  7. Gavman

    Gavman Senior Member

    i was kickboxing for four years prior to developing chronic fatigue. I doubt fitness was the issue.
  8. Francelle

    Francelle Senior Member

    Victoria, Australia
    It was while I was actually doing a gym program that things started to go pear-shaped for me in 2007. My heart rate was so high during exercising that the instructors kept ordering me to stop and rest. I persisted for eight months but had to give up when I started losing my balance and tipping sideways. This was all apart from the continued major 'joint' pain I started to get. One week I was in great pain from my knee, then the next week it was my ankle, then an elbow and so on.

    So my gym/exercise experience was nothing short of a disaster!
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    Sorry to keep Godwinning this, but it IS what it's all about and that horror 70+ years ago: complete lack of compassion, intellectual honesty, or common sense is endemic to some parts of Human society/culture or percentage of us.
    When there is power and lack of humanity and arrogance...innocents suffer, it is inevitable.

    Any mad crap can be made up to villify and persecute one group for the pleasure of another, and it is pleasure. By demonizing one, you justify self as "better" and get "security from such assurances of superiority"
    Witches, Jews, non-whites, gypsies, Communists, Protestants, Catholics...whatever it doens't really matter, it's just an excuse
    And the same occurs in many other countries/cultures/racial majorities (see Rawanda tribal genocide, riots in Indonesia targetting ethnic Chinese etc. No Human group is immune to such.)

    When such bigotry appears in those who have power, those who think their Middle Class/Upper Class education means they are "Not prone to bigotry like the Lower Orders!", it gets especially dangerous. They have both power and hubris, a deadly combination.
    Sorry, but I've met plenty of folk with degrees etc, who are incompetant dumbasses. Education and status is no guarantee of intelligence, honesty or genuine compassion, indeed, they can be a barrier to them by limiting experience (not that I'm saying being poor is any help either, lol)
    Always remember that a hell of a lot of doctors were behind the Eugnics evil of the last century, and yes, they were also strongly opposed by groups from the same profession, but the German medical system fervently aided and abetted the Euthanasia program EN MASSE, not just a few hard core nazi extremists, hell of a lot more than just that (see figures on how the killings increased)

    So, today, we see a modern day repeat of such evil crap. Eventually this will be yet another blot of shame on the medical profession, which they'll shrug off/evade as bloody usual, because they are a "professional class" and thus cannot/will not be held to account like they should...or other such professions, lawyers, politicians etc, would also be brought to book, see how Dr Bodkin Adams got away with 163 murders in England.

    Sigh, the Hippocratic Oath specifially warns AGAINST such behviours, but no, Dr Smugness always knows best :/

    my sincere appreciation to those who are still decent physicians by the way :) Rest can rot in Hell though.
  10. ukxmrv

    ukxmrv Senior Member

    Both of the people quoted above (Dr Speight and Prof Hooper) have been attacked by doctors or had problems. Speight fought against being retired out of his job to no avail. Prof Hooper is attacked because of his PACE submissions to the Lancet.

    UK doctors have had plenty of opportunity to listen to the ME patients side of the story and the doctors who do support us.

    We patients and doctors, write to them, send information, bring it to appointments, write to the media, medical journals, take part in every consultation process that we can. However, the UK medical Establishment is so dominated by the IAIYM group that it doesn't make any difference.

    I went to a standard NHS medical appointment with a consultant this week. He has 2 questions about ME for me (having read the recent BMJ propoganda).

    1. Had I tried Graded Execise?
    2. Why do ME patients believe that mental illness isn't a real illness?

    At least, he did ask me. Don't think he believed me though.
  11. maddietod

    maddietod Senior Member

    East Coast, USA
    Has anybody written up a simple fact sheet that we can hand to doctors, telling them OUR truth? I could use one.
  12. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    umm what would be helpful I think is just a "simple" one page list of studies done with thieir medical journal references or (pubmed links) which show abnormalities in ME/CFS. Its harder for a doctor to dispute a list of studies done by all different places. Just the thing we need next time we come across a doctor who says "why dont you believe its a mental illness?". Hit them with science.

    Does anyone know of a 1pg list of the most stand out studies?

    madie... i currently give the following easy to read list to all my doctors with the symptoms I get with ME highlighted (its long but it does give them more of an understanding of just how much Im impacted). (If one makes doctors keep this list in their your medical files, there is no excuse for them to ever say.. "I didnt know you had that issue" .
  13. Tulip

    Tulip Guest

    You could do what I have done and cut and paste the relevant info from the site below into word and then print it out, making several copies for the local doc, emergency and who ever else. I also printed out a letter by doctor speedy as he has been bedridden with ME for 15yrs.

    All the info is here:
  14. ukxmrv

    ukxmrv Senior Member

    I've been very good about educating doctors. Brought in printed information from proper medical journals Many times. Has never made any difference to my medical care.

    Not only do some of the NHS UK docs think that we are crazies they also have contempt for CFS researchers. If "something" hasn't happened in a lab close to them and by someone they know, then it hasn't happened.

    The refreshing thing about the doc above is that the BMJ article had given him the freedom to voice his prejudices. Normally they stay quiet and just look at us with a weird guarded, veiled look. Now the BMJ has identified us as dangerous loonies and the UK docs are enjoying baiting us.

See more popular forum discussions.

Share This Page