Showing posts with label GET. Show all posts
Showing posts with label GET. Show all posts

Thursday, June 10, 2021

The psychosomatic focus on CBT and GET has delayed scientific understanding of ME/CFS by 30 years

BDavid F Marks:

 "A new properly scientific framework for the understanding of MUS/MECFS is urgently needed, grounded in the biological bases of the illnesses. The psychosomatic focus on CBT and GET for MUS and MECFS has delayed scientific understanding of the disorders by 25 to 30 years." 

Monday, October 14, 2019

Work Rehabilitation and Medical Retirement for ME/CFS Patients. A Review and Appraisal of Diagnostic Strategies


Open AccessReview

Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies


1
Family and Insurance Physician, 1096 HZ Amsterdam, The Netherlands
2
Independent Researcher, 49032 Osnabrück, Germany
*
Author to whom correspondence should be addressed.
Diagnostics 20199(4), 124; https://doi.org/10.3390/diagnostics9040124
Received: 7 June 2019 / Revised: 11 September 2019 / Accepted: 13 September 2019 / Published: 20 September 2019
(This article belongs to the Special Issue Biomedical Insights that Inform the Diagnosis of ME/CFS)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients. The majority of patients who manage to continue or return to work, work part-time instead of full time in a physically less demanding job. The prognosis in terms of returning to work is poor if patients have been on long-term sick leave for more than two to three years. Being older and more ill when falling ill are associated with a worse employment outcome. Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do. However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement. View Full-Text

Thursday, October 11, 2018

Damning criticism of the flawed ME/CFS Graded exercise therapy Cochrane review




    Abstract

    The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective. Because of the failure to report harms adequately in the trials covered by the review, it cannot be said that graded exercise therapy is safe. The analysis of the objective outcomes in the trials provides sufficient evidence to conclude that graded exercise therapy is an ineffective treatment for myalgic encephalomyelitis/chronic fatigue syndrome.

    Tuesday, August 28, 2018

    Damning criticism of the flawed #PACEtrial by psychologist Prof Brian Hughes


    Damning criticism of the flawed #PACEtrial in a new book by Prof Brian Hughes on the “rampant methodological crisis” in psychology.

     'Rampant methodological crisis' - describes how psychologists invent their own study methods, change them part way if the data don't fit their preconceptions, misuse stats etc.

     “The controversies surrounding the PACE trial can be seen as emblematic of the real-world problems caused by psychology’s many crises.”

     From p. 140: That the PACE Trial continues to be so doggedly defended, despite a litany of damaging critiques, shows us how psychologists can retain an unswerving allegiance to their own ideas.

     You can read here part of the pages dedicated to the PACE trial (from p132 to 140, p 138 is missing).

    Monday, March 27, 2017

    PACE trial should acknowledge inefficacy and harmfulness of CBT and GET



    By Mark Vink, (Family Physician) the author of the 2016 Review of the PACE trial for which he was nominated for the John Maddox Prize for Standing up for Science.

    If CBT and GET had really been effective there would have been no need for an extensive number of changes to the recovery criteria made during an unblinded trial, making the definition much less accurate to the point that people who were still (severely) ill were classed as recovered.

    The time has now come for the PACE trial authors to stop misrepresenting their own results; acknowledge the inefficacy and harmfulness of CBT and GET to prevent further unnecessary suffering inflicted on patients by physicians/therapists, which is the worst of all harms, yet totally preventable.



    MORE @ Observantonline, the journal of the University of Maastricht

    Saturday, December 10, 2016

    Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted



    Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

    By spoonseeker 9 December 2016:

      As for the PACE authors themselves, I doubt that anything will make a difference. They had clearly decided how the trial was going to turn out before they even started it, and I can’t see anything changing their views about it now, whether peer reviewed or otherwise.

    PACE was not a voyage of discovery. As the godfather of PACE, Sir Simon Wessely, inadvertently revealed, they always knew exactly where they wanted to get to.

    They simply made whatever adjustments they needed in order to get there. They live in a world where they are right, patients are wrong, and the facts can be changed to support that. I doubt they’re open to any kind of reason.

    Or as Professor Steven Lubet, a Professor of Law at Northwestern University, recently stated:

    "Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. 

    But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. 

    You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.  Just so."



    Monday, November 21, 2016

    LSE: The medical and psychiatric establishment has to admit and apologise for abusing ME/CFS patients

    LSE: The medical and psychiatric establishment has to admit and apologise for abusing ME/CFS patients

      LSE, 21 November 2016:

      "the psychiatrisation of conditions like Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) where organic and physical conditions become ‘all in the mind’. Here, whilst there is a complex inter-relationship between the mind and body, psychiatric reductionism has resulted in a catalogue of instances of maltreatment, neglect and abuse."  

      "The medical and psychiatric establishment has yet to come clean, admit to or apologise for these abuses."

     

    Tuesday, November 8, 2016

    Bogus FITNET trial is a GET trial in disguise being tested on children who don't have #MEcfs



    Bogus FITNET trial is a GET trial in disguise being tested on children who don't have #MEcfs

    FITNET trial is an unblinded trial (not a RCT) using subjective outcomes which uses their own "ME/CFS" criteria so that they can select patients who do not have the disease but then label them as if they do ...

    Which is not surprising as Crawley, Bleijenberg and Knoop are involved who make Diederik Stapel look like an honest man. Pinocchio research from Britain and Holland. And the medical councils are still hibernating.

    If you want to make yourself sick have a look at their protocol but make sure that you've got a bucket ready or better still ask your GP for an antiemetic before you read it. You will need it.



    Sunday, October 2, 2016

    Does "the President of The Royal College of Psychiatrists condones what is widely considered to be scientific fraud?"



    Posted on behalf of Margaret Williams:
    Simon Wessely is at pains to distance himself from involvement with the PACE trial, but once again he seems to have overlooked the facts.
    The Trial Identifier is clear:
    “Section 4. TRIAL MANAGEMENT
    4.1 WHAT ARE THE ARRANGEMENTS FOR THE DAY TO DAY MANAGEMENT OF THE TRIAL?
    The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU.
    4.4. WHAT WILL BE THE RESPONSIBILITIES OF THE NAMED COLLABORATORS?
    Prof Simon Wessely will oversee the CTU”
    It also needs to be recalled that the post of Statistician Clinical Trials Unit Division of Psychological Medicine Ref No: 06/A09 was described as the “Johnson_Wessely_Job” (07/07/2006) at The Institute of Psychiatry where: “The team works under the direction of Professor Simon Wessely, the Unit Director. The team is supported by the regular input of a Unit Management Group from within the Institute of Psychiatry. The statisticians within the Unit also have regular supervision meetings with Dr Tony Johnson from the MRC Clinical Trials Unit. The post holder will be directly responsible to the CTU Manager (Caroline Murphy), supervised by the CTU Statistician (Rebecca Walwyn) and will be under the overall direction of the Head of Department, Professor Simon Wessely”.
    So please, Professor Wessely, stop dissembling, as you are fooling no-one but yourself.
    Despite the fact that post-hoc changes showed reported results that were up to five times better than those derived from the original protocol, you continue to defend what has been described by many as “fraud” in the PACE trial.
    Can it be said that the President of The Royal College of Psychiatrists condones what is widely considered to be scientific fraud?





    Friday, September 30, 2016

    Classical case of projection: PACE trial's Peter White accuses Prof Stark and Levin and Matthees, Kindlon and Maryhew of scientific misconduct

    Classical case of projection: PACE trial's Peter White accuses Prof Stark and Levin and Matthees, Kindlon and Maryhew of scientific misconduct. And at the same time he still claims that 22% of patients with this disease recover due to CBT and GET; Pinocchio Psychiatry at its best. That and More in today's Guardian; article by Peter himself:









    "Our research, and that of our colleagues in this field, has attracted its fair share of criticism. Some campaigners have even called for the research to be stopped, the findings retracted, and CBT and GET abandoned completely as they cause harm. One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

    To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT.

    "In the latest step in this saga, a blog  that hasn’t gone through the rigours of scientific peer-review, or being published in a journal claims that CBT and GET are not as effective as we reported. The authors got their figures by tweaks such as increasing the pass-grade for what counted as recovery, and excluding patients who had reported themselves as “much better”."

    https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research



    PS: A review of the PACE trial by Vink, that has gone through the rigours of scientific peer-review, and was published in a Medical journal found that CBT and GET are INEFFECTIVE, aka a NULL effect. You can read the excellent PACE trial review here

      PS 2: I hope that somewhere in the UK there is still a psychologist who hasn't gone to sleep to give PACE trial's Peter White emergency CBT to cure his false Therapy beliefs and turn him into an honest psychiatrist

    Saturday, September 24, 2016

    PACE trial's principal investigator Peter White has retired from clinical practice with immediate effect to avoid ...



    PROOF POSITIVE ? (REVISITED)
    Margaret Williams, 14th September 2016  

    "The role of Professor Peter Denton White OBE
    In 2004, Professor Peter Denton White was awarded an OBE for “services to medical education”;
    notices circulating at the time proclaimed him as leading the research into “CFS/ME” and said his OBE was “a well-deserved honour and acknowledgement of his contribution to work on CFS/ME”.

    He was born in November 1952: aged only 64, he suddenly retired from clinical practice just before he was compelled by an order of the court to release the raw data from the PACE trial, so any
    investigation by the General Medical Council for alleged professional misconduct is unlikely to be
    pursued, but is he guilty of misfeasance in public office?

    According to the Crown Prosecution Service (CPS) website, misfeasance in public office is a cause of
    action in the civil court against the holder of public office, the allegation being that the office-holder
    has misused or abused their power: such misuse or abuse is an affirmative act that causes harm to
    another party without reasonable justification. The NHS is a State body as it provides public health
    care, so this matter is one in which the public has a significant interest.

    Facts to be considered
    1. Peter White has used his own money, as well charitable money and public money, in order to
    lobby support for his belief that ME/CFS is a psycho-behavioural disorder that can be
    overcome through “cognitive restructuring” and graded aerobic exercise
    2. he has egregiously used large sums of public money (£250,000) to prevent the disclosure of
    data that would falsify his belief
    3. for nearly 30 years, he has ignored evidence that disproves his belief, including evidence from
    his own trials
    4. he has failed to correct errors of fact after being alerted to them
    5. he has consistently failed to disclose significant financial, institutional and ideological
    conflicts of interest
    6. he has been in breach of his NHS contractual obligations in that he has persistently ignored
    mandatory directives and has wilfully encouraged other clinicians to do the same
    7. as a consequence of his actions:
     money which should have been used for biomedical research into the aetiology of
    ME/CFS has been diverted to fund studies into therapies which were already known
    to be ineffective and even harmful
     patients have been stigmatised as sociopaths and malingerers who refuse to accept
    they have a behavioural disorder
     patients have been denied financial support from private insurers for whom Peter
    White and his colleagues work (for example, he was Chief Medical Officer for the
    giant re-insurer Swiss Re and was also CMO to Scottish Provident) and from the" ...

    Proof positive (revisited) .pdf

    Tuesday, August 9, 2016

    That moment you realize there is an overlap in entry and recovery criteria in the 8 million dollars costing thing of beauty




    The real thing of beauty is the review of the PACE trial, which amongst things showed that the real outcome of this trial, contrary to the published conclusions, is that:

    1. CBT and GET are ineffective to treat people with ME (also known as CFS or ME/CFS) also called a NULL effect
    2. A discovery by the trial which proves yet again that ME/CFS is a physical disease
    3. The disproval of the biopsychosocial model favored by the British (PACE trial) psychiatrists

    The full article "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review" is available free of charge.

    Friday, June 3, 2016

    Ester Crawley given a million pounds to replicate FITNET's NULL effect


    Ester Crawley given a million pounds to replicate FITNET's NULL effect

    http://www.nets.nihr.ac.uk/projects/hta/14192109

    Ester Crawley's Study will be based on the following Dutch study also called FITNET which ignored their own NULL effect just like the PACE trial did.




    Because it's obviously more important to make sure that people who are severely ill do not get proper treatment and to make sure that their kingdom which is based on fake tan doesn't come tumbling down. The Sad State of Affair of greed and denial medicine ...

      Nijhof SL, Priesterbach LP, Uiterwaal CS, Bleijenberg G, Kimpen JL, van de Putte EM, Internet-based therapy for adolescents with chronic fatigue syndrome: long-term follow-up. Pediatrics. 2013 Jun;131(6):e1788-95. doi: 10.1542/peds.2012-2007. Epub 2013 May 13.

      ( Bleijenberg G aka the Dutch Peter D White or Simon Wessely and van de Putte EM aka the Dutch Ester Crawley)

      "Cognitive behavioral therapy (CBT) is known to be an effective treatment of adolescents with chronic fatigue syndrome (CFS), but its availability is limited." No it's not known to be effective but they want us to believe it is effective which is a totally different thing ... The reality is, as a recent review of the PACE trial showed, that CBT and GET are totally useless !!! But the BIG LIE must obviously continue ...

      "Fatigue in Teenagers on the Internet (FITNET), an Internet-based CBT program for adolescents with CFS, has been developed as an alternative to face-to-face CBT. Recently, its short-term effectiveness has been proven in a randomized clinical trial. Here we aimed to assess the long-term outcome of CFS in adolescents after FITNET treatment and after usual care."

      "Conclusion: The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU. At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace."

      "At LTFU, usual care led to similar recovery rates" aka as a NULL effect ...

      http://www.ncbi.nlm.nih.gov/pubmed/23669515

     

    Wednesday, April 20, 2016

    Great letter by Professor Hooper asking for retraction of the PACE trial 

    Great letter by Professor Hooper asking for retraction of the PACE trial via meactionuk.org.uk, April 15, 2016:

      Dear Dr Horton,

      I write to call again for the retraction of the PACE study paper by White PD et al. (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. "Lancet "2011;377:823-836).

      MORE @ meactionuk.org.uk

     

    Friday, April 8, 2016

    Published, independent review of the PACE trial‏

    The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review


    Corresponding author: Vink, Family Physician, Soerabaja Research Center, Amsterdam, The Netherlands
    E-mail: markvink.md@outlook.com

    Abstract
    The main findings reported in the PACE trial were that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) were moderately effective treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and fear avoidance beliefs constituted the strongest mediator of both therapies. These findings have been challenged by patients and, more recently, a number of top scientists, after public health expert Tuller, highlighted methodological problems in the trial. As a doctor who has been bedridden with severe ME for a long period, I analyzed the PACE trial and its follow-up articles from the perspectives of a doctor and a patient. During the PACE trial the eligibility criteria, both subjective primary outcomes, and most of the recovery criteria were altered, creating an overlap of the eligibility and recovery criteria; consequently, 13% of patients were considered “recovered,” with respect to 1 or 2 primary outcomes, as soon as they entered the trial. In addition, 46% of patients reported an increase in ME/CFS symptoms, 31% reported musculoskeletal and 19% reported neurological adverse events. Therefore the proportion negatively affected by CBT and GET would be between 46% and 96%, most likely estimated at 74%, as shown in a large survey recently conducted by the ME Association. Medication with such high rates of adverse events would be withdrawn with immediate effect. There was no difference in long-term outcomes between adaptive pacing therapy, CBT, GET and specialist medical care, and none of them were effective, invalidating the biopsychosocial model and use of CBT and GET for ME/CFS. The discovery that an increase in exercise tolerance did not lead to an increase in fitness means that an underlying physical problem prevented this; validates that ME/CFS is a physical disease and that none of the treatments studied addressed this issue.

    FULL article in Journal of Neurology and Neurobiology

    Thursday, March 24, 2016

    #PACEtrial Psychiatry is much worse than #DiederikStapel psychology: Two great articles about the seriously flawed PACE trial

    Two great articles about the seriously flawed PACE trial

      Editorial: On PACE by Trevor Butterworth, Mar 21, 2016: "And the thing about patients who either suffer from a rare disease, or a more common and inexplicable one as with ME/CFS, is that they are usually a formidable resource—a network of distributed experts who have sifted and weighed the scientific research with the kind of avidity you would expect, given that their lives depended on it. In pharmacology, rare disease patient groups are highly respected and are seen as partners in research rather than just subjects and consumers of studies."

      MORE @ stats.org

      AND

      PACE: The research that sparked a patient rebellion and challenged medicine by Professor Rebecca Goldin, Mar 21, 2016 :

      "The results from PACE (including these) have been published in prestigious journals and influenced public health recommendations around the world; and yet, unraveling this design and the characterization of the outcomes of the trial has left many people, including me, unsure this study has any scientific merit. How did the study go unchallenged for five years? And how could journalists have recognized the problems before reporting unqualified, but unjustified, good news?"

      MORE @ stats.org

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