New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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PACE Participants' Newsletter and more

Discussion in 'General ME/CFS News' started by Marco, May 2, 2010.

  1. Marco

    Marco Grrrrrrr!

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    These are a little dated but I wasn't aware that they existed.

    I must admit I'm impressed that the good Professor White took such trouble to produce such an excellent document to support and inform participants on the PACE Trial (preventing drop outs never crossing his mind I'm sure).

    And a particular thank you to P.T.Buchan - "I want to run a mile or three" - quite!

    http://www.pacetrial.org/docs/participantsnewsletter2.pdf
     
  2. Marco

    Marco Grrrrrrr!

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    Hold on - it gets better.

    Wouldn't you be chuffed if your own GP spoke so glowingly about the PACE course materials :

    "I think even the layout of it, is with the programme moving to more positive colours, has clearly been very carefully thought about"


    Yeahhh! - colour therapy. Perhaps the next draft could be in black and white for patients to colour in on their own when not licking condensation off the windows.


    And how nice of Prof White to attend TWO international conferences on our behalf to confront and expose the charlatans. Thanks to Prof white we can now put that nasty Dr Chia out of our minds completely. Imagine mixing up CFS patients with patients with gastrointestinal problems - its fatigue stupid - DOH! Oh and nice to see that CBT increases grey matter in the brain (participants' brains only!).

    http://www.pacetrial.org/docs/participantsnewsletter3.pdf
     
  3. Marco

    Marco Grrrrrrr!

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    Last but not least, lets not forget our old friend.

    Simon Wessley and co debunk a device that allegedly improves the taste of cheap red wine. Old Wine in New Bottles indeed!

    Drawn to drink: A double-blind randomised cross-over trial of the effects of magnets on the taste of cheap red wine


    Sheer class. I'm sure our Bad Science friends would be impressed.

    Just hope the NHS wasn't funding this :


    http://www.informaworld.com/smpp/content~content=a727179225&db=all
     
  4. justinreilly

    justinreilly Senior Member

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    And then:

    I think I'll give myself a treat and take a hike to the top of Everest.
     
  5. justinreilly

    justinreilly Senior Member

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    Thank You for Protecting Us, Peter White! Hugs from the USA!

    From the PACE newsletter:
    outrageous! That wily Dr. Chia is now trying to pass off patients with somatic symptoms and "even signs" as CFS patients! Where would we be without true heros like Peter White protecting us from quacks like Dr Chia?

    Hugs from the USA! :hug:
     
  6. Robin

    Robin Guest

    Is it normal for a researcher to have a newsletter for study participants? Complete with patient feedback and poems? I know it's not blinded or anything, but, really Dr. White? Really?
     
  7. rebecca1995

    rebecca1995 Apple, anyone?

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    Well, as Reeves said of White at a recent CFSAC, "He's an unusually intelligent individual..."

    S-C-A-R-Y. :worried::worried::worried: Not what I needed to send me off to sleep. Gonna leave the night light on...
     
  8. Angela Kennedy

    Angela Kennedy

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    Yes. That is really strange. GLOWING patient reports, a POEM? I think this needs looking at and commenting on - especially when the 'results' come out.
     
  9. Adam

    Adam

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    Manic Monday

    Marco

    Too much for early on a Bank Holiday Monday. :D

    Rebecca

    Change your Sig. Join COFIB at once.

    And the rest of you'se guys on this thread, behave. These are very, very clever people we are maligning here. :tear:

    Just packing my rucksack. Gonna jog into the Peak District. Scale Mam Tor and be back home in time for my daily dose of colour therapy.

    Pass me the crayons luv.:eek:
     
  10. Countrygirl

    Countrygirl Senior Member

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    Did anyone else notice that the trial was partly funded by the Department of Works and Pensions? :eek::confused:

    Since when has that government department funded medical research or treatment strategies? On the basis of previous experience, I can only describe the involvement of this particular organisation to be quite sinister.

    I find every aspect of this newsletter, from it general presentation to its deliberate attempt to create confusion about the nature of this disease to be utterly offensive to us as a patient body.

    We are not suffering from 'Chronic Fatigue', the term employed in this cleverly designed document which clearly sets out to disseminate misinformation and untruths. We have a devastating physical illness that has taken our lives from us. How dare this government try to obfuscate the truth that a serious illness is threatening to decimate its population. Let us hope that the results of the UK XMRV trial will grant us the ammunition we need to bring shame down on the heads of the psychiatrists and government bodies who are responsible for the medical and social neglect they have deliberately perpetrated on a substantial proportion of a very sick U.K. patient population.

    Does anyone know of any evidence that the DWP has funded medical research or treatment strategies in the past?
     
  11. Angela Kennedy

    Angela Kennedy

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    This is a key issue, one which I have noticed has become more and more evident, even with the publication of the PLOSONE paper by McClure et al and the explanatory letter given by Cleare, Wessely et al on the PLOSONE 'readers comments' page (which I responded to). There were key assertions made that indicated clinical signs associated with organic disease were EXCLUSIONARY criteria for admission to certain research cohorts, even if, for example, Fukuda et al PROSCRIBE most medical investigations in CLINICAL settings!!! (How absurd is that? But look at Fukuda and the evidence is there. It truly is astounding what is said in Fukuda). White's department at Barts basically made the same assertions about GI problems in 'CFS' in response to the NICE draft Guidelines, as TomK has highlighted before (and some other stuff about wheelchair use and levels of impairment, for example, which I think is relevant to this issue).

    It does appear that key 'organic' signs and symptoms ARE frequently experienced by people given CLINICAL diagnoses of 'CFS' or 'CFS/ME' - such gastro-intestinal signs and symptoms as identified by Chia, for example. Indeed they are given as a possible set of symptoms in the Canadian Guidelines.

    HOWEVER, it is wholly possible people suffering from symptoms and signs such as those, are NOT being recruited into CBT/GET and other trials (or indeed, the XMRV research Cleare and Wessely co-authored). In fact I'd go so far as to say the evidence to support what I'm saying here is growing.

    Nevertheless, people, very ill people with sometimes severe GI problems, for example, are being given Oxford 'CFS' diagnoses (even where in research cohort settings they would be excluded) and packed off to the CLINICS (away from any research process) to be processed through CBT/GET (even if this is potentially dangerous for them), given minimal investigations, and basically subject to all the adverse effects of psychogenic dismissal.

    Now this leads to a very 'interesting' possibility. Sharpe et al asserted in 1997 that:

    “Abnormal physical signs should not be accepted as compatible with a diagnosis of CFS.”

    If this prescription were to be taken literally, there is good reason to predict that many people given a diagnosis of ‘CFS’ would have to be subsequently excluded from such a diagnosis, as the incidence of clinical signs and laboratory-elucidated abnormalities in the biomedical research populations alone is high, let alone clinical populations.

    Yet White etc. to the best of my knowledge, are still accepting patients at their CLINICS, who should by their own RESEARCH standards (and White's own comments such as above) be excluded. Furthermore, Cleare and Wessely claim in their PLOSONE response that their populations are representative of CFS populations in the UK!

    Again - the PACE cohort is problematic at best - issues identified by some of us before the trial was started. FINE also (I still need to read the full BMJ paper which I haven't been able to access yet.)

    The apparent refusal (and certainly neglect) to establish research populations of at least Canadian defined 'ME/CFS' sufferers in the UK becomes more culpable, shall we say, as time goes on. There is enough evidence to suggest research bods ARE aware of these discrepancies.
     
  12. V99

    V99

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    I just don't know what to say about this newsletter. It's just so bizarre.
     
  13. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Robin, I don't recall OTTOMH, any other UK trial for which a patient propaganda handout, sorry, newsletter, was produced for trial participants. The FINE Trial had a dedicated website, but no newsletter as far as I recall.

    In the PACE Trial protocol, it was said that participants would also be sent birthday cards or Christmas cards (or both). Bless.
     
  14. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Yes, it's been known since the trial was first announced that DWP were part funders and yes, I think this is the only evidence of DWP funded "medical research or treatment strategies".
     
  15. Gerwyn

    Gerwyn Guest

    PACE has got about as much connection with a random controlled trial as Winnie the Poo has to wih English retro virology.Mind you our Winnie might actually do a better job of looking for XMRV than two English retrovirologists I could mention!
     
  16. justinreilly

    justinreilly Senior Member

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    Angela,

    I agree this is very important! Please don't let them get away with this!
     
  17. Marco

    Marco Grrrrrrr!

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    Courtesy of Melvin Ramsey, lifted from the MEAction Website



    MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]


    The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

    Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of 'feeling awful'. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia.

    There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying 'this patient's problem does not come within my field'. Nevertheless, by this time the unfortunate patient has acquired the label of 'neurosis' or 'personality disorder' and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.


    I've dug through all my old books on ME dating from the 80's and ALL mention gastrointestinal symptoms. Presumably the idea behind trying to deny that GI problems are part of ME is to concentrate the focus on simple 'fatigue'.
     
  18. jimbob

    jimbob ME/CFS84-XMRV+

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    good lord, are they still bloodletting over there too?!
     
  19. Robin

    Robin Guest

    Has any patient of say, five or more years duration, not had GI issues at some point? It's one of those things, like adversity to taking hot showers or having trouble standing up in the same position for a long time, that is nearly universal to all patients.

    I admit to not having read Fukuda in entirety. It is pretty weird (like excluding the obese! Apparently Reeves didn't read Fukuda either!) I think you're referring to this part:

    That is really odd for a diagnosis of exclusion. So, they leave it up to the individual physician to try to figure what tests to run to "confirm or deny another diagnosis", as if all diseases present in a textbook manner! How many accounts have I read of people having treatable illnesses like Addison's or Celiac being misdiagnosed with CFS? (more then a few)

    My major beef is that post exertional malaise is not necessary for diagnosis. Why is White so uptight about the Canadian criteria?

    This:

    Should be a requisite for every ME/CFS study!!
     
  20. V99

    V99

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    I wonder why too? :confused:;):confused:
     

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