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Testimonials

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So, what do we call a therapy for which numerous, far-reaching claims are being made, which is based on implausible assumptions, which is unproven, and for which people have to pay dearly?

The last time I looked, it was called quackery. – Edzard Ernst, MD

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We just needed to put to rest, once and for all, the idea that this [ME] is just psychosomatic or that people were making this up, or that they were just lazy – Ellen Wright Clayton, professor of pediatrics and law at Vanderbilt University

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Patients should be warned that the Lightning Process is quackery backed by pseudoscientific theory – James Coyne, Psychologist

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To date, neither the ASA nor CAP has seen robust evidence for the health benefits of LP [The Lightning Process]. Marketers that make efficacy claims about the therapy or refer to the treatment of medical conditions are likely to breach the Code unless they hold robust clinical evidence in support. – The Advertising Standards Authority (ASA)

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“Such products [psychological recovery programs] also benefit from the non-specific effects of the intervention. Just doing something, anything, to address a chronic problem is likely to make someone feel better.” – Steven Novella, MD

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These money-making scams are dangerous, and will never help genuine M.E. patients. It is cruel and unhelpful to recommend or badger M.E. patients about trying such pseudo-treatments; please don’t do it! – The Hummingbird’s foundation for M.E

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The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS. – Dr. Charles Shepherd, medical adviser for the ME Association

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[about the Lightning Process] Many experts have dismissed the claims as placebo at best – and damaging to children at worst. – Netdoctor.co.uk, Natalie Healey

We’re very unhappy about things like the Lightning Process – I’ve referred several Lightning Process practitioners to the Advertising Standards Authority for making completely unsubstantiated therapeutic claims about these processes. – Dr. Charles Shepherd, medical adviser to the ME Association

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I think that the single most damaging misconception perpetrated on ME patients is the idea that deconditioning is the problem and that exercise is the antidote. – Dr William Weir

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(…) many other “alternative gurus” use these tricks: you’re not trying hard enough; you don’t have enough faith; you’re not letting go of your old habits; you really are better but you just don’t want to or can’t admit it; or, unfortunately, you’re resistant to the treatment. One explanation you will probably never hear, though, is “I was wrong about your problem being due to stress hormones caused by being in a physiological Catch-22. – The Skeptic’s Dictionary

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We don’t know what causes it yet [ME/CFS], there is a lot of research happening and what we do know is this is a biomedical illness, it isn’t something that’s in patient’s heads, it isn’t something that has a psychological or psychiatric causation – Dr Heidi Nicholl, Associate Professor at La Trobe University and CEO of Emerge Australia

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The removal of Graded Exercise Therapy as a recommended treatment for patients with ME is a momentous step in the right direction. – Dr. Shaun Peter Qureshi, Palliative Medicine Physician, University of Edinburgh.

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I think that when the full details of the [PACE] trial become known, it will be considered one of the biggest medical scandals of the 21st century. – Carol Monaghan, Member of Parliament UK

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In my view, the uninterpretability of evidence from trials that fail to overcome basic difficulties, combined with ethical concerns, means that it is inappropriate to recommend either cognitive behavioural therapy or exercise therapies for ME/CFS. – Professor Jonathan Edwards

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Patients remained severely disabled after treatment with cognitive behavioural therapy in a specialist clinic in the UK. Therefore, it cannot be said that cognitive behavioural therapy is an effective treatment for chronic fatigue syndrome. – Dr Mark Vink and Alexandra Vink-Niese

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“I took the time to read everything that was sent to me about PACE etc. As a researcher in patient-centred care, I was and still am traumatized by what I read.” – Simon Decary, physiotherapist and assistant professor of rehabilitation (lead author of the JOSPT editorial)

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“There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.” – Dr. Charles Shepherd, medical adviser for the ME Association

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“Bogus marketers often use trickery and vague language to take advantage of people. For example, testimonials in ads can seem honest and heart-felt, but they can be completely fake: in fact, they may not disclose that actors or models have been paid to endorse the product. Even when testimonials come from people who have taken the product, personal stories aren’t reliable evidence of effectiveness.” – Federal Trade Commission

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The only thing that predicted who would stay sick after an acute viral infection was the severity of the initial infection and the immunologic response to that infection and that predicted everything. There were no psychiatric predictors whatsover. – Dr. Nancy Klimas, director, institute for neuro-immune medicine

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Do not offer people with ME/CFS: therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).

Excerpt, NICE draft guidelines

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Those who question GET are often told that they must simply exercise more, no matter how badly they crash afterward. It is bad enough to torture the data, but it is indefensible to torture patients based on manipulated results [about the PACE trial]. – Steven Lubet, Williams Memorial Professor of Law, Northwestern University

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[About the PACE trial] A prime example of a study misinforming clinical practice for decades – at the expense of thousands of patients. If you want to show your students what negative real life consequences questionable research practices and a lack of open science can have, start with the PACE trial. – Prof. Jonas Kunst

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The official removal of Graded Exercise Therapy as treatment for ME/CFS is an important moment in UK history. It is a long overdue recognition of the harms of this therapy which is based on unfounded theories of patient beliefs causing illness. – Dr. K.N. Hng, ST7 General Internal Medicine and Gastroenterology (Ret).

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ME/CFS is a biological illness, not a psychological disorder – Dr. Elizabeth Unger, chief of the CDC’s Chronic Viral Diseases Branch

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“For many years severely affected ME sufferers have known that CBT and GET are not magic cures, as if they were, everyone would have been cured and there would be have been no controversy. – Dr. Nigel Speight, Paediatric Physician.

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The evidence is now so strong that ME/CFS is a serious multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder. – The Countess of Mar (APPGME)

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We have received reports from those who have spent a great deal of money to try this or similar treatments who have made no improvement, were not cured or have relapsed severely – Associated New Zealand ME Society (ANZMES)

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“We found that 89 per cent of patients felt worse after doing physical activity, so if you feel worse after graded exercise therapy, it’s not going to be something that you want to do,” – Dr Nicholl, medical ethicist, CEO of the Emerge ME/CFS patient group

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This is a classic bad study [about the PACE-trials]. The study needs to be retracted… I would like to use it as a teaching tool, to have medical students read it and ask them, ‘How many things can you find wrong with this study’? Dr. Ron Davis, director of the Stanford Genome Technology Centre and director of the Science Advisory Board of the End ME/CFS Project

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“One of the worst offenders is a product called Dynamic Neural Retraining (DNRS). The website for this product has all the red flags of snake oil. There is a page, for example, for testimonials but none for published research supporting their claims.” – Steven Novella, MD

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It is no longer acceptable for these conditions to be labelled as psychological. Indeed it never was, but the views of powerful influencers within the establishment have held patients and clinicians to ransom. – Dr. Asad Khan, Consultant in Respiratory Medicine, Manchester University Hospitals.

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