ABUSE OF ME PATIENTS BY HEALTH CARE PROFESSIONALS·MONDAY, MAY 21, 2018
NICE doesn’t work for us, and medical leaders are either blissfully ignorant or believe too strongly in what they are fed by higher powers. Meanwhile, children are being harmed. So we need to manage without them. We need a revolt from the ground.
Desperate parents have got together and composed a scorching letter, putting together high quality information and shining a light on all that is wrong in the world of ME. It is very well researched with links to pertinent information and will, or certainly should, enlighten all our Paediatricians to the true facts about ME.
We cannot wait for the establishment to teach our Paediatricians the right information. Not when NICE refuses to see the urgency to remove their harmful recommendations. Not when CFS/ME clinics are run by Psychiatrists and by the lovely Professor Esther Crawley. We have waited long enough. Now it’s time to act. It’s time to empower our Paediatricians with the right information, so that they will make the right decisions for our children.
We need EVERY Brit who reads this to act. We must come together to save our children. Save our young comrades from being put through even worse hell than what we have to live with. This is an anonymous exercise. Therefore there should be no risk involved, though it may be wisest for those of us who DON’T have a child with ME to do it, rather than those of use who do. If you agree with the contents of the letter below, this is what you should do to help children with ME:
Copy the letter onto your computer, print, and send to EVERY Paediatrician at your local hospital. Note they ALL have to get one. You can find out their names by Googling your local hospital.
This doesn’t have to cost you a fortune in stamps. Simply put them in individual envelopes, with the recipients’ names and department written on, and take it to your local hospital. Their internal mail system will take it from there. Simply ask any member of staff to put it in their internal mail. If you know where the Paediatric department is, take it there and the letters will reach their targets sooner.
Let’s save our children!
(The original Word document can also be found in various Groups. Using that, if you can find it, will make it easier.)
We are parents of children with ME. We are writing to as many Paediatricians as we can because many of you look after children with ME. ME is the single greatest cause of long term school absences in children, and in this country, children receive little to no proper medical support, very little understanding from the school authorities, and are often forced to undergo harmful Graded Exercise Therapy. If families refuse to undergo this harmful “treatment”, or if the children fail to improve, families are accused of Factitious and Induced Illness and threatened with Child Protection proceedings. Some children are forcibly removed, then institutionalized to be neglected of their physical needs and systematically abused by misinformed staff trained to force them to exercise. This documentary shows some of the things that are done to children with ME in this country: http://voicesfromtheshadowsfilm.co.uk/
If you are involved with such cases, it may be that you are taking your advice from Professor Esther Crawley, head of the University of Bath’s Centre for Child and Adolescent Health. Or from CFS/ME Clinics which are run by Psychiatrists or the otherwise misinformed.
However, please allow us to enlighten you on the quality of her work, and that of Psychiatrists in this field, so that you may make up your own mind about the quality of their advice, and whether you wish to follow them, at the risk of Malpractice, Medical Negligence, Informed Consent, or Medical Abuse lawsuits.
First the Psychiatrists. You should consider the infamous PACE trial, a £5 million endeavour, the only clinical trial to have been part funded by the Department of Work and Pension. One wonders why the DWP would fund a clinical trial.
(clue: that is the department that pays social benefit)
PACE examines the efficacy of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) in Chronic Fatigue Syndrome – note the study was in Chronic Fatigue Syndrome, not ME. PACE can be found here:
PACE used admission criteria for CFS (not ME) which were vague and meaningless, the outdated 1991 Oxford criteria, available here: https://bit.ly/2I2SORO Note PACE authors were involved in developing this Oxford criteria. It is a loose definition which does not adequately separate patients who may have other causes of fatigue, such as anxiety or depression. In 2014, the Agency for Healthcare Research and Quality (AHRQ) recommended that the Oxford definition be “retired from use”: https://bit.ly/2IuQzb1 (pg. 8)
PACE was fraught with methodological flaws. These are detailed here: http://journals.sagepub.com/toc/hpqa/22/9
This page contains many links, each representing a critique by one independent scientist or researcher. A more user friendly summary can be found here, written by Dr. David Tuller, Senior Fellow in Public Health and Journalism at the University of California, Berkeley: https://bit.ly/1M6Rhk5
PACE claims that CBT and GET are effective treatments for Chronic Fatigue Syndrome, and makes the totally unsubstantiated claim that the trial results also apply to ME patients, provided fatigue is their main symptom. On the contrary, when raw data was re-analysed by independent researchers, it was found that neither are effective treatments. PACE had grossly mis-reported their results, by using underhand techniques such as relaxing their definitions of recovery so that some of them were more lax than the entry criteria (ie. you could get worse during the trial and still be classed as recovered), and so that the average 80 year old or a patient with heart failure would have functionally been classed as recovered: https://doi.org/10.1186/s40359-018-0218-3
That is in addition to using only subjective measures, totally ignoring their negative objective outcomes such as the 6 minute walking test.
PACE flaws are so many and so fundamental that the authors have been referred to the GMC for scientific and financial fraud. In February 2018 PACE was discussed in a UK Parliamentary debate as “one of the greatest medical scandals of the 21st century”.
Watch this debate here: http://bit.ly/2oi5b1t
NICE guidelines, which recommend CBT and GET for ME, are now undergoing full review due to there being no evidence for these approaches in ME: https://bit.ly/2kgzC8A
The Centers for Disease Control and Prevention (CDC) have already removed it from their recommendations: https://www.cdc.gov/me-cfs/treatment/index.html
You might now rightly be wondering why anybody would want to do what the PACE authors did. This analysis into the politics of distorted research, published by the Centre for Welfare Reform in 2016, may answer your questions, https://bit.ly/2Lg9UKy
as well as Dr. David Tuller’s observations of interactions between lead PACE author Peter White and the insurance industry:
Now to Professor Esther Crawley. She subscribes to the CBT/GET paradigm, and has persistently conflated ME, CFS and plain chronic fatigue in her research. We leave you to consider the objective of this sloppy practice.
(You probably understand ME and CFS to be the same thing. They are not, but for the purposes of this letter the distinction is not important since CBT and GET don’t work in CFS either, and many patients labelled with CFS actually have ME.)
As an example of her work, her department is currently trialing CBT for teenagers with CFS/ME, delivered via Skype: https://bit.ly/2eixHv0
Dr. David Tuller criticises this trial: https://bit.ly/2fAyNAL
In another study, Professor Esther Crawley classified children as having Chronic Fatigue Syndrome as long as they and their mothers reported on a questionnaire that they were tired, didn’t play too much sports and didn’t have a drug or alcohol problem. A diagnosis by a clinician was not required, nor was any effort to rule out other possible medical causes: https://bit.ly/2kbZTSG
Another example is the SMILE trial, which examined an expensive commercial talking therapy called the Lightning Process (LP) in children with ME and CFS: https://bit.ly/2k9zjJW
The Lightning Process features in the Skeptic’s Dictionary:
LP, by many patient accounts (what it actually entails is a highly guarded secret, the trial fails to detail it and therefore cannot be reproduced, and the website gives little information), is abusive and harmful: https://bit.ly/2ItV4CD
In November 2017 LP was disciplined by the Advertising Standards Authority for misleading advertising: https://bit.ly/2IwIY7L One patient illustrated her experience of the Lightning Process thus:
The SMILE trial has received criticism from many parties:
In addition to all this, Esther Crawley also diagnoses children displaying symptoms of ME with Pervasive Refusal Syndrome: https://bit.ly/2IzJphw This purported condition does not exist either in the International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) for 2016, http://www.who.int/classifications/icd/en/ or the Diagnostic and Statistical Manual of Mental Disorders (DSM–5): https://bit.ly/2AmSlpX
Anecdotally, this alternative diagnosis tends to be made when children fail to improve on her abusive treatments (CBT and GET), or worse, deteriorate following her treatments. The purpose of making this factitious diagnosis? We can certainly guess.
So what are the true facts about ME?
There are many diagnostic criteria for ME. Here are two:
1. From the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ ME):
2. The 2012 International Consensus Primer:
A key required symptom is Post Exertional Malaise (PEM) – that is the worsening of all symptoms after any activity beyond the patient’s safe limit. Here is a key document explaining the relationship between PEM, Graded Exercise Therapy (GET) and clinical research:
Graded Exercise Therapy is harmful in ME, a fact ignored by Esther Crawley and Psychiatrists who run CFS/ME services in this country:
With these rates of harm, if GET was a drug, it would long since have been withdrawn. Certainly Psychiatrists have no business being in charge of the management of a serious, severely disabling, multi-system physical condition.
Here is an excellent overview of ME/CFS in Family Doctor, a journal of the New York State Academy of Physicians:
https://bit.ly/2t3GI4w (pg. 23)
And here is a management primer for Paediatric cases, published in June 2017:
The National Centre for Neuroimmunology and Emerging Diseases, Griffith University, Australia, provides this excellent video presentation on ME/CF: https://bit.ly/2rSU5BN. Note it states that CBT and GET are contraindicated in ME.
For further insight into the realities of ME, there is Dr. Hng’s little book M.E. and Me, an open account of the personal struggles of a British doctor who fell sick with ME:
We hope this information has been helpful to you.
Parents of children with ME.