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S. Wessely: "PACE trial, which tested interventions with an impeccable safety record"

Discussion in 'General ME/CFS News' started by Dolphin, Dec 26, 2011.

  1. Dolphin

    Dolphin Senior Member

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    Free full text at:

    http://www.foundation.org.uk/journal/pdf/fst_20_07.pdf

     
  2. Dolphin

    Dolphin Senior Member

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    Regarding S. Wessely's safety claim

    Regarding the specific claim by Simon Wessely:

    the following paper would challenge that claim:

    Free full text at: http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=&tabid=501&forcedownload=true
     
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  3. Wonko

    Wonko Senior Member

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    for a man who says he has no involvement in "CFS" research, and hasnt done for the last 10 years, he doesnt half seem to be vocal on matters "CFS".
     
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  4. Enid

    Enid Senior Member

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    SW - "psychiatric whatever that means" - Quite ! - can we look forward to a definition now.
     
  5. pamb

    pamb Senior Member

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    Wow, this guy just has no shame or conscience does he? (hmmm, con-science?)
     
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  6. alex3619

    alex3619 Senior Member

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    Hi pamb, con-science, goes with with non-science which I have been using for a while. Bye, Alex

    ps non-science is pronounced "nonsense"
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Isnt it funny how he mentions antivirals, maybe he should actually look into it more, maybe dr lerners work and he will find that antivirals have a much greater improvement rate then any PACE stuff. or maybe dr lerners work is just a placebo effect especially how it lowers viral titres. Maybe they should test for viruses and viral titres but they would never do that because they would lose their credibility(although i think they lost that along time ago), they would also say that viral testing is to expensive and wont do it due to expense but wont hesitate to spends a small fortune on PACE treatment that doesnt work.

    He's just a boof head!!
     
  8. alex3619

    alex3619 Senior Member

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    Hi heapsreal, if Dr Learners results are just placebo, clearly they are ten times better a placebo than CBT/GET. I want more of those placebos.

    Also, seriously, if this were a drug we would accept the results? With five adverse events per patient? A drug company would halt all study, and yank it off the market, not push it with glowing praise. Its a pity we cant attribute all CBT/GET failure and harms to one entity, because those that have been harmed could then launch a class action lawsuit.

    Bye, Alex
     
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  9. jonnyboy

    jonnyboy

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    the sheer audacity of this guy is amazing. Just the outright lies he comes out with boggles the mind. I dont think there is a single person with cfs or me who would not be happy if his silly cbt and get worked. But it doesnt work, and wessely just cant comprehend that perhaps he is wrong.

    What i found amazing was that I went to the optician back in june to have annual checkup for contact lenses. I happened to mention this time that I had just been diagnosed with cfs. Then the optician said, that they are taught in training about the problems cfs/me people have with vision problems. And i thought if opticians can see there is an actual physical problem, how on earth can doctors treat this as psychosomatic? that is insane to me
     
  10. alex3619

    alex3619 Senior Member

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    Here is commentary from the journal this was published in, on their main website http://www.foundation.org.uk/

    We should test this. We should invite the Countess of Mar, Hooper, Maes, Sheffield, the IACFSME to all respond - if its an unbiased public policy journal, then we have a UNIQUE opportunity to reply, and we need to get the reply from respected researchers, doctors and so on.

    Bye
    Alex
     
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  11. Sean

    Sean Senior Member

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    It still amazes me after 20 + years of following the debate.
     
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Alex
    10:1 this is a front group or manipulated by such, for the corporations...$$$
    Lobbying is big business...
    and if there's money and pwoer involved, why should they care about ME, or rather perhaps, why are those who've been screwing us over involved with such, hm....?

    wessely's fluffing, as the Titanic goes down, seeking a life raft to avoid being dragged down by the lead-weighted iceberg he made, aimed and fired at us!
     
  13. Dolphin

    Dolphin Senior Member

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    Would be great if somebody replied.
    Who or what is Sheffield? David Sheffield Bell?
     
  14. alex3619

    alex3619 Senior Member

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    Sorry Dolphin, I have an ongoing mental glitch regarding Charles Shepherd, I have repeatedly called him Sheffield. I have no idea why. Bye, Alex
     
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  15. Snow Leopard

    Snow Leopard Senior Member

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    Many of the reasons why we are sceptical of the PACE trial is much the same reasons why we are all sceptical of unblinded drug trials. It is a double standard to 'accept' the results of non-pharma trials but not those of unblinded pharma, alternative health.

    Oh yeah and the diabetes trial he was talking about had a 95% confidence interval with a minimum difference of 0.1 - it was barely significant at all. (previous discussion on the forum)
     
    Dolphin likes this.
  16. dancer

    dancer Senior Member

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    Indeed. I also was pleasantly surprised at my last eye-doc appointment. He said, "Yes, I'm very familiar with CFS. I look at my CFS patients similarly to those who have had strokes. There are often problems with how the brain is communicating with the eyes...fluctuations...etc." Considering the neurologist I saw shrugged off the abnormalities on my MRI, it was refreshing to talk with at least some area of medicine who was knowledgeable, compassionate, and took it seriously. (sorry this is off topic, but the mention of the optician snagged my attention)
     
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  17. biophile

    biophile Places I'd rather be.

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    A reasonable sounding start.

    Chronic fatigue is a common symptom of depression and anxiety (and countless other medical diseases and psychiatric diagnoses), so finding such an association between the two is unsurprising. Extrapolating this to all chronic fatigue is inappropriate, but guilt by association and disingenuous discussion of physical factors is Wessely's typical style for CFS discussion. As usual though, no mention of Kisely's work finding the association between number of physical symptoms and prevalence of psychiatric comorbidity exists regardless whether symptoms are either organic or "unexplained".

    Hasn't the large premorbid depression studies been exposed as flawed? Not that I would reject it out of hand, or find it surprising for broadly defined CFS which is problematically conflated with symptoms of depression and hence the call from some researchers for better criteria to avoid epidemiological artifacts. Perhaps Dolphin can remind me about the national cohort studies.

    Back to the blanket hyperbole about abnormal illness beliefs and deconditioning.

    Ah, another comment from Wessely about how "beautiful" the PACE Trial is. I have to agree with him for different reasons, because it was a more robust design for a microcosm of the macrocosm of nearly everything wrong with CBT/GET research which does make it an item of beauty for exampling.

    Excessive reliance on the patients' subjective perception which authors previously deemed as distorted/unreliable, ignoring the contamination of questionnaires by reactivity bias, exaggerated effect sizes of subjectively reported improvements which are refuted by objective measurements, authors' fear-avoidance of actigraphy which would have embarrassed them, strawmanning the rival therapy ie pacing, obscuring safety data in between ineffectiveness and persistent severe declines ie CBT/GET is "safe" because it is deemed OK to suffer a 20/100 point reduction in function for up to 4 weeks at a time and/or patients don't have to increase activity as presumed in a somewhat similar sense that a toxic drug is also safe when patients don't have to take it if they don't want to, et cetera.

    So it isn't because of the biopsychosocialists' poor track record, nor because the patients these organizations represent commonly report adverse effects in real world applications of CBT and GET, nor it is the dozen or so problems identified with the PACE Trial (some before it was published because of the protocol); wise Simon says the answer is, it was simply rejected out of hand mainly because of the stigma of mental illness!? Where did Wessely gain this impression from anyway; relying on his own prejudices, or reading biased newspaper coverage on the issue, or browsing the comments and forum posts? The internet was also "abuzz" with legitimate criticisms which exposed flaws in his pet therapies that he built his reputation on. Wessely's own research shows the stereotype of ME/CFS patients as anti-psychiatry is inaccurate, so I guess he is referring to an unspecified small group of people rather than the entire ME/CFS community?

    Wait a minute, wasn't the effect of Rituximab significantly stronger than the effect of CBT/GET, and unlike the PACE Trial, blinded or placebo controlled? So no, the comparison is not about "identical results". And didn't the Rituximab study show that it was safe anyway? I assume the "same sources" Wessely refers to are patient organizations and internet buzz? I can't speak for other patients but I do have serious concerns about the safety of any drug for CFS because I've become sensitive to them in general.

    I can't deny that more skepticism was applied to PACE than Rituximab, when generalizing the responses from the online ME/CFS community. However the Rituximab researchers aren't coming from a background of decades of double speak and spin doctoring and misleading promotion of their treatments, all which make it harder for patients to trust the results of CBT/GET. Further, the Rituximab researchers are from a more mainstream field, they aren't coming from the academically-incestuous fields of psychology and psychiatry where there is a darkly colourful history which is both long in general and recent when it comes to ME/CFS in particular.

    The patient community welcomed the Rituximab study not just because of the apparent benefits of the drug but also because it provided clues about actual disease mechanisms which could advance the field, compared to the disputed assumptions about the role of abnormal illness beliefs and deconditioning which are mostly hot air from professional psychobabblers that has stagnated the field. We are desperate for promising leads, not a consolidation of gyroscopic spin and suffocating influence.

    PACE itself is a good example of why the erosion of trust continues. Researchers who greatly widen up the outcome goalposts after seeing the worse than expected data from the FINE sister trial don't attract the trust of patients. Researchers who claim that 60/100 points in physical function (PF/SF-36) is "significant/severe disability" for the purposes of CFS diagnosis and trial entry but somehow "normal" for the purposes of a successful outcome (while in the real world about 84% of healthy people of similar age are scoring 80/100 or more and usually 95/100), do not deserve trust or even respect on the issue. CBT proponents who claim full recoveries are routinely occurring, while ignoring 6MWD and actigraphical data which suggest no improvements whatsoever, do not inspire confidence in their therapies.
     
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  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    God. Shame on all of these journals and doctors for not closing the door on this psychopath. Lies about patients, diseases and treatments from a discredited sadist are just fine for a journal article, but any positive study on XMRV/HGRVs must be retracted despite a lack of clear flaws?

    Let's write this journal: fstjournal@foundation.org.uk
     
  19. biophile

    biophile Places I'd rather be.

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    justinreilly, I saw your name on mecfsforums.com with a certain Star Trek avatar titled "Wessley Crusher" and just had to laugh out loud, LOL! Thanks.
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Glad to be of service!
     

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