Countrygirl
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Edited to say that the parents have created a new version see below.
Parents of children with ME have composed a letter for all paediatricians in the country.
Please, if you are in the UK could you copy the letter and post to every paediatrician in your local hospital.
There are one or two more references I think that could be added to improve on the letter, but it is good as it stands.
FROM UK PARENTS TO ALL PAEDIATRICIANS
Dear Paediatrician,
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 institutionalised 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. That would make sense given her prominent position of authority. However, please allow us to enlighten you on the quality of her work so that you may make up your own mind about the quality of her advice, and whether you wish to follow it, at the risk of Malpractice, Medical Negligence, Informed Consent, or Medical Abuse lawsuits.
First for some background. 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:
https://doi.org/10.1016/S0140-6736(11)60096-2
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 interaction between lead PACE author Peter White and the insurance industry: https://bit.ly/2IAbEAL
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. A diagnosis by a clinician was not required, nor was any effort to rule out other possible 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:
http://skepdic.com/lightningprocess.html
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:
https://bit.ly/2HGwE4e
https://bit.ly/2HYTDLz
http://www.virology.ws/2017/12/13/trial-by-error-the-smile-trials-undisclosed-outcomes/
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):
http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
2. The 2012 International Consensus Primer:
https://bit.ly/2KAxnFg
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: https://bit.ly/2rTqDuA
Graded Exercise Therapy is harmful in ME, a fact ignored by Esther Crawley and some Psychiatrists:
http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
https://undark.org/article/chronic-fatigue-graded-exercise-pace/
With these rates of harm, if GET was a drug, it would long since have been withdrawn.
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:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474682/pdf/fped-05-00121.pdf
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, which details the personal story of a British doctor who fell sick with ME:
https://www.amazon.co.uk/dp/1984050826/
And if you have Netflix, please watch the documentary Unrest.
We hope this information has been helpful to you.
Yours sincerely,
Parents of children with ME.
Parents of children with ME have composed a letter for all paediatricians in the country.
Please, if you are in the UK could you copy the letter and post to every paediatrician in your local hospital.
There are one or two more references I think that could be added to improve on the letter, but it is good as it stands.
FROM UK PARENTS TO ALL PAEDIATRICIANS
Dear Paediatrician,
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 institutionalised 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. That would make sense given her prominent position of authority. However, please allow us to enlighten you on the quality of her work so that you may make up your own mind about the quality of her advice, and whether you wish to follow it, at the risk of Malpractice, Medical Negligence, Informed Consent, or Medical Abuse lawsuits.
First for some background. 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:
https://doi.org/10.1016/S0140-6736(11)60096-2
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 interaction between lead PACE author Peter White and the insurance industry: https://bit.ly/2IAbEAL
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. A diagnosis by a clinician was not required, nor was any effort to rule out other possible 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:
http://skepdic.com/lightningprocess.html
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:
https://bit.ly/2HGwE4e
https://bit.ly/2HYTDLz
http://www.virology.ws/2017/12/13/trial-by-error-the-smile-trials-undisclosed-outcomes/
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):
http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
2. The 2012 International Consensus Primer:
https://bit.ly/2KAxnFg
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: https://bit.ly/2rTqDuA
Graded Exercise Therapy is harmful in ME, a fact ignored by Esther Crawley and some Psychiatrists:
http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
https://undark.org/article/chronic-fatigue-graded-exercise-pace/
With these rates of harm, if GET was a drug, it would long since have been withdrawn.
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:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474682/pdf/fped-05-00121.pdf
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, which details the personal story of a British doctor who fell sick with ME:
https://www.amazon.co.uk/dp/1984050826/
And if you have Netflix, please watch the documentary Unrest.
We hope this information has been helpful to you.
Yours sincerely,
Parents of children with ME.
Last edited:
