WP

There is something rotten in Scandinavia

by WP
May 10, 2021June 3, 2021

Myalgic encephalomyelitis (also sometimes known as Chronic Fatigue Syndrome or ME/CFS) is a physical illness with severe neurological symptoms. However, a small but persistent group… Read More »There is something rotten in Scandinavia

Long-COVID: an untapped market for secretive “recovery” businesses

by WP
May 2, 2021June 3, 2021

Long-COVID The global COVID-19 pandemic has caused a wave of people suffering from post viral symptoms (known as long-COVID). A whole new group of people… Read More »Long-COVID: an untapped market for secretive “recovery” businesses

ME/CFS recovery programs and affiliate marketing

by WP
April 26, 2021June 3, 2021

You have probably already noticed how similar the ME/CFS recovery programs are marketed. From the owner who supposedly had ME/CFS years ago to the smiling… Read More »ME/CFS recovery programs and affiliate marketing

How to recognise unproven programs for ME/CFS

by WP
April 18, 2021June 3, 2021

Things to keep in mind when looking for treatments online Sometimes desperation makes patients or their loved ones lose common sense. This make them easier… Read More »How to recognise unproven programs for ME/CFS

How alternative treatments may trick ME/CFS patients

by WP
April 17, 2021May 2, 2021

People with ME/CFS can be an easy target group So, you have been reading about some alternative treatment for ME/CFS online. Maybe a friend or… Read More »How alternative treatments may trick ME/CFS patients

(…) 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

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

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

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

“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

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)

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

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)

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

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

“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

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

“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)

“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

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

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)

“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

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

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

[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

[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

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

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

“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

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

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

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

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