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Threat to Professor Hooper

Discussion in 'General ME/CFS News' started by Daisymay, Feb 22, 2011.

  1. Daisymay

    Daisymay Senior Member

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    This is being sent on behalf of Professor Malcolm Hooper.

    This letter has some interesting information on the diagnostic criteria used in PACE which may not be generally known.


    ..................


    Because of the serious nature of the criticisms I received in a recent communication, I thought it necessary to place my response in the public domain.




    Dear Mr Jameson

    As you raise some important issues in your communication of 20th February 2011 about my initial response to the PACE Trial, I will reply in detail.

    I am aware that you are an engineer and I am aware of your own position and of your hypothesis about what you refer to as CFS, for example, I note that you believe CFS to be (quote) a functional illness which can be reversed by psycho-social rehabilitation treatments. I also note that you equate CFS with persistent burnout, and that you believe (i) the viral theories do not adequately explain why personality and mental attitude have been shown to be important in determining which patients contract CFS and which recover the most quickly, (ii) Psychosocial treatments do result in recovery from CFS, (iii) the patients motivation and belief in treatment are likely to be important in recovery, (iv) many CFS patients have a lack of confidence and motivation, (v) it is likely thatCFS is simply a more severe form of burnout, (vi) The most effective treatments appear to be rehabilitation programmeswhich encourage the patient to re-integrate back into normal life, and that you postulate that CFSis essentially the same as burnoutwhich persists long after the triggering HPA stressor have been removed due to factors such as negative mental attitude and loss of motivation (http://www.mind-body-health.net/persistent_burnout_theory.html).

    I will now address what you describe as my serious errors.

    1. You state that the PACE trial compared subsets using the CDC criteria. The criteria that are universally known as the CDC criteria are the 1994 Fukuda et al criteria. Indeed, the PACE Trial Identifier listed the 1994 CDC Fukuda criteria as the means of identifying the disorder and the Fukuda criteria are mentioned on page 81 of the 226 page Full Protocol (not to be confused with the shorted form of the Protocol that was published in BMC Neurology 2007:Mar 8:7:6: http://www.biomedcentral.com/1471-2377/7/6) and originally it was these international CDC criteria that were to be used by the Principal Investigators. However, on 22nd October 2004 the Chief Principal Investigator, Professor Peter White, wrote to the West Midlands Multicentre Research Ethics Committee (MREC) seeking substantial amendments to the Protocol and at section 2.1 of his application he substituted the Reeves et al 2003 for the 1994 Fukuda criteria, hence the criteria that are universally known as the CDC international criteria (ie. the 1994 Fukuda criteria) were NOT used to compare subsets in the PACE Trial. The criteria that were used (misleadingly described in the Lancet paper as international criteria for chronic fatigue syndrome) were the Reeves et al 2003 criteria.

    2. You state that the trial compared subsets using the London criteria for ME (requiring postexertional malaise). The original intention of the PIs was to use the Ramsay definition of ME, and you will see from page 417 of Magical Medicine these were date-stamped by the MREC as received on 21st March 2003 (http://www.meactionuk.org.uk/magical-medicine.htm). Once again, however, Professor White amended the Protocol and he substituted what appears to be his own version of the London Criteria for the Ramsay definition. You will see from page 417 of Magical Medicine that the Ramsay definition required the following: fluctuation of symptoms from day to day or within the day; headaches; giddiness; muscle pain; muscle cramps; muscle twitchings; muscle tenderness; muscle weakness; pins and needles; frequency of passing water; blurred vision; double vision; increased sensitivity of hearing; increased sensitivity to noise; feeling generally awful, and muscle weakness after exercise.

    In contrast, Professor Whites version of the London Criteria specifically states on page 188 of the Full Protocol that neurological disturbances are not necessary to make the diagnosis and they further state that the usual precipitation by physical or mental exercise should be recorded but is not necessary to meet criteria. Notwithstanding this clear statement in the Full Protocol that postexertional malaise is not necessary to meet the London Criteria, the text of the Lancet article states that participants were also assessed by the London criteria for myalgic encephalomyelitis (version 2) requiring postexertional fatigue so there is a significant discrepancy that requires explanation by Professor White, since two such divergent criteria cannot both have been used in the PACE Trial (note that Professor Whites version 2 is dated 26.11.2004).

    According to Professor Whites version of the London Criteria, there is no requirement for impairment of short-term memory and loss of concentration, nor is there any requirement for primary depression or anxiety disorder to be present (indeed, if depression or anxiety disorder are present, the Full Protocol states This means if any depressive or anxiety disorder is present, the London criteria are not met). This makes the fact that the PIs reported a 47% prevalence of mood and anxiety disorder at baseline particularly notable, because the PIs state that of the 641 participants, 329 (ie. 51.3%) met Professor Whites version of the London Criteria; in other words, virtually everyone who did not have anxiety or depression met the London Criteria used in the PACE Trial, but Professor Whites London Criteria in the Full Protocol (to which the PIs were obliged to adhere) do not require precipitation of symptoms by physical or mental exercise. Put another way, of the 53% who did NOT have anxiety or depression at baseline, 96.8% met Professor Whites London Criteria, but those criteria do not require the cardinal feature of ME to be present. This begs the question as to what disorder was being studied under the title of ME/CFS, because the clear distinction between Ramsay-defined ME and somatisation disorder has been significantly lessened by the PIs.

    Whilst the Ramsay definition does exist (Postgrad Med J 1990:66:526-530), I would remind you that the London Criteria do not in fact exist and that the reference cited in the Lancet is to the 2004 Westcare Report, which simply said that they were proposed criteria. The London Criteria have no known authors; they have never been published; there is no methods paper which specifically describes them as a case definition; they have never been approved nor have they even been finally defined (there are various versions); they have never been validated and they are not on PubMed thus are not available for scrutiny so they cannot be accessed for comparison. This means that Professor White was essentially able to create his own version of the London Criteria as evidenced on page 188 of the Full Protocol. Your assertion that the London Criteria required postexertional malaise is thus incorrect despite the PIs having said in their Lancet paper that it was required, and this is an issue for Professor White to address ie. he needs to clarify whether or not he adhered to his own Protocol.

    3. You state there is nothing in the Oxford criteria that excludes people with neurological disorders . You may not be aware that one of the authors of the Oxford criteria, Professor Anthony David, clarified the issue of whether or not the Oxford criteria exclude people with neurological disorders: British investigators have put forward an alternative, less strict, operational definition which is essentially chronicfatigue in the absence of neurological signs, (with) psychiatric symptomsas common associated features (AS David; BMB 1991:47:4:966-988). The Oxford criteria (JRSM 1991:84:118-121) suggest that people with a neuromuscular disorder should be used as a comparison group, which rules out the inclusion of people with ME, a WHO classified neurological disorder since 1969.

    The fact that the Wessely School do not believe or accept the WHO classification does not mean that ME is a somatisation disorder as they continue to assert despite the irrefutable biomedical evidence to the contrary. If their psycho-social model of ME/CFS were correct ie. if the symptoms are caused by deconditioning consequent to fear of activity, it would be expected that a programme of CBT/GET would be curative, yet the results of both the FINE and PACE Trials do not support the PIs model. I note that you fail to reference Professor Wesselys statement that the PACE Trial interventions are not remotely curative made in his JAMA editorial of September 2001. Furthermore, the Oxford criteria specifically state There are no clinical signs characteristic of the condition, a criterion which immediately rules out ME/CFS, since there are numerous characteristic, objective, reproducible, abnormal signs that are discernable by any reasonably competent physician. They include the following:

    labile blood pressure (this is a cardinal sign); low systolic BP <100 in 50%
    nystagmus and vestibular disturbance (vestibular dysfunction seen in 90%)
    sluggish visual accommodation
    fasciculation
    hand tremor
    neuromuscular incoordination
    cogwheel movement of the leg on testing
    muscular weakness
    marked facial pallor
    postural orthostatic tachycardia syndrome (POTS)
    positive Romberg
    abnormal tandem or augmented tandem stance
    abnormal gait
    evidence of Raynauds syndrome and vasculitis (vascular signs cross dermatomes)
    mouth ulcers
    hair loss
    singular reduction in lung function (shortened breath-holding capacity seen in 60% of patients tested)
    enlarged liver (not usually looked for by psychiatrists).


    4. You state that the PACE Trial did use an objective outcome measure (6 min walking ability in metres). As the only objective measure of outcome, this is completely inadequate as a measure of physical capacity. A single test is unlikely to reveal any abnormality and serial testing is essential because it is the second test that provides objective evidence of abnormalities in ME/CFS patients and of their inability to work. The reference provided by the PIs for the six minute walking test is Buckland RJA et al (BMJ 1982:284:1607-1608) but the paper itself cites McGavin CR et al (BMJ 1976:i:822-823), which draws attention to the difficulty of achieving reproducible results with such a test. Moreover, the Chief Principal Investigator himself, Peter White, has published evidence supporting the need for serial post-exercise testing (Immunological changes after both exercise and activity in Chronic Fatigue Syndrome: a pilot study. White PD, KE Nye, AJ Pinching et al. JCFS 2004:12 (2):51-66 ).

    None of the interventions in the PACE Trial enabled participants to achieve anything like a normal walking speed for the full six minutes when compared with a healthy individual. It is regrettable that Professor White decided to abandon the use of an actometer, which would have provided unequivocal objective evidence of improvement or non-improvement. The only reported improvement on the six minute level walking test for those allocated to CBT was an increase of 21 steps, whilst for those allocated to APT (note that APT is not the same as pacing, as APT is a vehicle for incremental aerobic exercise and involves planning, achieving and sustaining targets) there was an increase of 20 steps, these improvements having cost the nation 5 million.

    The NHS Choices website provides the following comment on the success or otherwise of the PACE Trial: Compared with specialised medical care alone, CBT plus specialised medical care improved fatigue scores by 3.4 points on a 33-point scale, while GET plus specialised medical care improved scores by 3.2 points. Physical function score improvements were 7.1 for CBT and 9.4 for GET on a 100-point scale" (http://www.nhs.uk/news/2011/02February/Pages/therapies-moderately-improve-CFS.aspx).

    The two favoured interventions (CBT and GET) had side-effects rates of 89% and 93% respectively and according to the PIs, adverse events were common.
    Rated on their 33-point and 100-point scales, participants improved on average only 10% and 8.25% with the two recommended interventions, which I believe hardly qualifies as even moderately effective as the PIs claim.

    You accuse me of doing potential damage to CFS patients by putting them off the only treatments that have been proven to be effective. I refute your allegation that I appear to be putting out deliberate misinformation, but you are of course free to carry out your threat to complain about me in any forum you choose, including to my University. However, if you exercise this option, be aware that you will need supportive evidence and that your own credibility will come under scrutiny.

    Malcolm Hooper
     
    aaron_c, taniaaust1 and Roseblossom like this.
  2. Enid

    Enid Senior Member

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    Take a while to take in dasiymay - can barely read/tolerate the threats implied. Who is this Jameson ? Thanks for placing in the public domain - it goes to the core of all the utter nastiness here. A personal thank you to Prof Hooper who has fought long and hard against the ignorance entrenched in the establishment here.
     
    taniaaust1 likes this.
  3. Daisymay

    Daisymay Senior Member

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    Hi Enid,

    I will send your thanks.

    Here is some info on Jameson, other than this I know no more about him:

    (http://www.mind-body-health.net/pers...ut_theory.html).


    And this lnk to his book:
    http://www.amazon.com/Mind-Body-Health-Stress-Tolerance-Jameson/dp/0595295908

    "Mind-body Health and Stress Tolerance is a groundbreaking work which presents an overall theory explaining how mental attitude and lifestyle can profoundly affect physical and mental health.

    Based on the latest research into areas such as the placebo effect and the circadian body clock, this book shows how the mind interacts with the immune system and the body’s hormone rhythms to influence health, vitality and stress tolerance.

    This book presents the first-ever cohesive theory to explain burnout, chronic fatigue syndrome (CFS, also known as ME), irritable bowel syndrome, post-viral fatigue syndrome and other misunderstood illnesses, explaining why these illnesses occur and how they can be treated.

    Aimed at both patients and researchers, this book brings together the results of over one hundred research papers and the experiences of many patients who have recovered from chronic illnesses such as CFS.

    Comments by Peter DeMauro, M.D., Hackensack University Medical Center:
    “All in all, I am very impressed with it and rather enjoyed reading it…I think it is great tool for patient education.”

    About the Author
    David Jameson is an engineer and entrepreneur who developed CFS following a viral infection, and subsequently recovered. Not content with the lack of information about the illness, he spent three years researching the condition and talking to other patients, eventually developing a cohesive theory to explain CFS and related illnesses."
     
    taniaaust1 likes this.
  4. Esther12

    Esther12 Senior Member

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    Was it the threat to complain about Hooper? Not a thread of violence, or anything like that?
     
  5. Enid

    Enid Senior Member

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    dasimay - this certainly needs to be in the public domain. And not remotely connected to Medicine.
     
  6. wdb

    wdb Senior Member

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    Does anyone know what the Reeves et al 2003 criteria are and how they differ from the 1994 Fukuda et al criteria, I'm not having much luck trying to find out ?
     
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  7. eric_s

    eric_s Senior Member

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    I find it hard to believe someone who has really had CFS would write such a book.

    I think this was the "threat":
    So not really a threat in the sense of something illegal.

    Btw, why does it seem that in the UK all that "mind-body" stuff is so popular? I think you are overdoing this. There are "horrible" people that never get sick and others that are totally balanced, nice etc. and do get sick. I don't think we have so much influence on these things.
     
  8. SOC

    SOC Senior Member

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    WTH?! An "engineer and entrepreneur" spent 3 measly years researching the condition (whatever that means) and thinks he knows anything about "CFS and related illnesses"?

    How about getting some biochemistry degrees? Maybe some immunology and neurology expertise? Medical school perhaps (although that could be worse for his knowledge on the subject).

    This guy has zero credibility in my book. What a scam!
     
  9. Angela Kennedy

    Angela Kennedy

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    I understand he is 'sciencewatcher' on wikipedia. Has made loads of trouble for me and Guido Den Broeder over the years, as in false accusations etc. VERY active on the Co-cure message board, unfortunately.

    His 'threat', though clearly intimidatory, is terribly comical and ineffectual.
     
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  10. Esther12

    Esther12 Senior Member

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    That's interesting Angela. Sciencewatcher presents himself as so independant... certainly not as if he had CFS and is selling books based upon his conception of it.
     
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  11. eric_s

    eric_s Senior Member

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    I mean just look at all the people that have mental illnesses. They can be totally disturbed, have all sort of extreme symptoms, but their bodies work pretty well, if nothing's wrong with them physically, don't they? They could walk around all day, talk with no end, whatever.

    So how could it be that in us some rather minor things like too much focus on physical symptoms or anxiety would knock us out in this way? There are people who have extreme, pathological anxiety of getting sick, having a heart attack etc. but they don't get ME/CFS.

    Or where are those ME/CFS patients that have won the lottery, fallen in love, gotten a better job or whatever and have forgotten about their ME/CFS and picked up a normal life again from one moment to the next? I have never heard of such a story. How can people believe these theories...
     
  12. Enid

    Enid Senior Member

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    It's the threat side which is so nasty. And Professor Hooper being world renown and respected both in and out of the academic and medical worlds - the threat is pathetic too.
     
  13. alex3619

    alex3619 Senior Member

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    Wizard's First Rule: People can be made to believe any lie, either because they want to believe it's true, or because they are afraid it's true. Terry Goodkind

    So there may be more truth in fiction that any biopsychosocial stuff.
     
  14. max

    max

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    ..... just to keep this on top ......
     
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Well, syphilis, Lyme, low blood sugar, urinary infections and a few other issues can cause serious mental issues...and still be purely orgnaically based and treatable with medicines for such


    Bit OT
    didn't know that one,. had heard of astthmatic-like effect post exhertion.
    gotta go for lung x-rays/tests, lol, typically I got bronchitis after they were arranged. ah, Murphy's law :p
     
  16. SOC

    SOC Senior Member

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    Huh. I used to have bronchitis about 50% of the time in several episodes a year. Didn't think it was an ME/CFS thing. Gets weirder by the week.
     
  17. max

    max

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    ..... and again .....
     
  18. Hope123

    Hope123 Senior Member

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    It's unfortunate that this happens to people who stand up for us. In the US, Dr. Ken Friedmann, a professor of pharmacology who has a relative with ME/CFS, also faced threats from his university in New Jersey (UMDNJ) for his work on the federal CFS advisory committee. I think he might have left the uni for that reason.
     
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  19. Sean

    Sean Senior Member

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    That's the guy. Scum bag.

    He is more responsible for the misleading crap in the CFS article than anybody else, by a big margin, and is a good example of how sheer persistence and dishonesty can win out over reality and basic decency, (at least in the short-medium term).

    Don't believe me? Go read the talk pages on the CFS article on Wikipedia. He has seriously distorted the whole thing from the moment he turned up a few years back, and has played VERY dirty partisan sneer & smear politics. You name an illegitimate debating tactic, and he has indulged in it, usually repeatedly.

    One or two long term editors on that article have had to waste much of their lives and sanity trying to keep that rabid dog under control, and they deserve huge credit for that thankless, soul destroying task. Tekaphor, in particular, is one of the genuine unrecognised heroes in the ME/CFS world, IMHO. If it were not for him (with help from some others), the article would be infinitely worse, it would basically be little more than Jameson's deluded poisonous rantings.

    It is to Wikipedia's great discredit, even shame, that they have allowed him to get so far on so little, to have so much influence.

    I ain't religious in any sense, but if there is a hell, then it has a special place reserved in it for people like Jameson.
     
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  20. muffin

    muffin Senior Member

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    'sciencewatcher' on wikipedia --- So, now the question is what do we all do about this stupid scumbag????
    Do we have a contact for him? Website, blog, etc. so that we can ALL slam him hard for his stupid and deadly "theories"???

    No, this dangerous moron is not off the hook. We go for him too.

    Please someone locate his contact info, post it here and shoot it up to Facebook where many of us are reading, watching, responding - hundreds of us in the US, Canada, UK, Australia, etc. Here and Facebook so we can do a massive email bomb on this moron.

    NONE of these dangerous fools are going to get away with this stuff anymore. The war is on. Post his info and we go for him too.
     
    lnester7 likes this.

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