ME PACE Trial

The Claim That The Cure For The Crippling Fatigue Of ME/CFS Was To Change Your Mind Always Seemed Bizarre. Now It Really Is On The Way Out…

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      By Jerome Burne in Health Insight UK.   In September 2016 I posted a blog here about a research bombshell that had just exploded at the heart of one of the most bitter disputes in medicine – how best to treat a condition known as ME/CFS that involves relentless fatigue. A team of […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

David Tuller

    By Cort Johnson in Health Rising.   “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]

Myalgic Dncephalomyelitis (Or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis And Management

NICE

      Call for evidence   What we need We need evidence from the areas listed below for the guideline we are developing on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: 1. Studies that evaluate: Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS. Methods of monitoring and/or reviewing […]

Trial By Error: An Ill-Informed Article In The Guardian

David Tuller

      By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]

#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today

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  By #MEAction.   In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

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  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

A Mother’s Story: Alem Matthees

Me Australia

  by Helen Donovan in ME Australia.   May 12 is Alem Matthee’s birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem’s work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study’s authors claimed. In […]

The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall

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    From #FindME.   Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]

The Propaganda War On Chronically Ill And Disabled People Just Went Up A Gear

Disability Dice

    By Steve Topple in mrtopple.com.   Another week and the media dropped another heavy dose of propaganda against chronically ill and disabled people. Nothing new under the sun, I hear you cry. Except there is. Because this time it shows a clear, coordinated pattern emerging in this ongoing smearing of a whole community. […]

Trial By Error: My Latest Letter To Bristol’s Legal Department

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    By David Tuller, DrPH Today I sent the following e-mail to Sue Paterson, director of legal services at Bristol University. I cc-d several other people on the e-mail. ********** Dear Ms Paterson— Earlier this month, I sent you an e-mail to ask, among other questions, when Bristol University plans to finish its investigation […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

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  By Cort Johnson in Health Rising. David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and writer for the New York Times, the policy journal Health Affairs, and other publications, Tuller became outraged at the long history of neglect and abuse directed toward ME/CFS. His publications […]

Trial By Error: Crowdfunding, Week 2; And More Sharpe And Chalder

David Tuller

    By David Tuller, DrPH As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It […]

Return On Investment II: David Tuller

David Tuller

By Jennie Spotila in Occupy M.E.   Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. […]

Trial By Error: The CDC’s Pathetic Response To Reuters

David Tuller

    By David Tuller, DrPH The recent Reuters article about the illness, or cluster of illnesses, variously called CFS, ME, CFS/ME and ME/CFS was problematic for many reasons. One of them was the information included from the US Centers for Disease Control and Prevention. In explaining why the CDC dropped its longstanding recommendations for […]

CDC The Puppeteer And The UK BPS Connection To Bury ME

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By Gabby Klein in Relating to ME.   Fake Media Attacks on #PwME In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME).  The false media stories about the […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

Chronic Fatigue Syndrome: Medical Treatments: Written question – 218214

Parliament

  Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]

Trial By Error: BMJ Amends Last Week’s PACE Article

David Tuller

    By David Tuller, DrPH.   Last Wednesday, the UK Health Research Authority released a letter reviewing its analysis of the PACE trial. Members and supporters of the GET/CBT ideological brigades have misrepresented the HRA letter as a vindication of the study. On Thursday, BMJ posted an article about the HRA letter by science journalist Nigel Hawkes. The […]

The HRA Report Does Not Exonerate The PACE Trial, It Merely Confirms That Its Research Ethics Approval Was In Order

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  From Not The Science Bit.   Great news. The PACE Trial controversy has been resolved! Oh, wait…er, no it hasn’t. Rather, the spin cycle of eminence-based medicine continues. The UK’s Health Research Authority have released a report on their assessment of the beleaguered PACE Trial, and have concluded that they are happy with it. Cue the usual well-paid, eminent, professorial […]

Trial By Error: A Recap Of The School Absence Study

David Tuller

  By David Tuller, DrPH Last week I broke the news that Bristol University is conducting an independent investigation of a number of studies that were exempted from ethical review on the grounds that they qualified as “service evaluation.” Because the issues involved are confusing and complex, I thought it would be helpful to repost here part […]

The Effects Of Graded Exercise Therapy And Positive Thinking On A Young Girl With ME

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      By Adriane Tillman in #MEAction.   Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk […]

Trial By Error: Steve Brine’s Troubling Claim In Parliamentary Debate On ME

David Tuller

By David Tuller, DrPH During last Thursday’s historic debate on ME in the House of Commons, it was refreshing to watch one MP after another stand up and slam the PACE trial and the non-evidence-based treatment paradigm promoted for decades by the GET/CBT ideological brigades. It was also interesting to note that no one defended this egregious […]

Parliamentary Debate on ME

Parliament

Am I the only one left a bit disappointed at the end of the ME debate in Parliament today  ?  Many impassioned speeches, which by their nature took a lot of time as they repeated much information given by previous speakers, but all well intentioned and good to see them representing their constituents. I then […]

Guidelines For ME/CFS Outdated And Dangerous

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By Felicity Nelson in Medical Republic.   NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]

Trial By Error: My Six-Month Review

David Tuller

    By David Tuller, DrPH So it’s time again to review my work and figure out what I’ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, […]

Trial By Error: My Norwegian Interview

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    By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]

Trial By Error: How BMJ Enabled Bristol’s Ethics Exemptions

David Tuller

      4 DECEMBER 2018 By David Tuller, DrPH Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. ********** Dear Dr. Godlee— As you know, I […]

Trial By Error: Some Good News On Cochrane

David Tuller

  By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]

Do Graded Activity Therapies Cause Harm In Chronic Fatigue Syndrome ?

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  By Tom Kindlon in Journal of Health Psychology.   Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures […]

GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates

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  By Cort Johnson in Health Rising. Our mission is to promote evidence-informed health decision-making by producing high-quality, relevant, accessible systematic reviews and other synthesized research evidence. Our work is internationally recognized as the benchmark for high-quality information about the effectiveness of health care. Cochrane  The Cochrane Reviews are the gold standard – highly respected and […]

Trial By Error: Some Thoughts About NICE

David Tuller

  By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]

Trial By Error: An Australian Exchange With Professor Sharpe

David Tuller

  By David Tuller, DrPH. Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as […]

The Triumph of Eminence-Based Medicine

Research Study

  By Brian Hughes in Not The Science Bit.   Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]

Carol Monaghan Continues Fight For Parliamentary Debate On ME

Carol Monaghan SNP

This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]

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