Letter from parents of children with ME to paediatricians in the UK

[Apologies if this has been posted before]



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. 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:
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PACE used admission criteria for CFS (not ME) which were vague and meaningless, the outdated 1991 Oxford criteria, available here: https://bit.ly/2I2SORO Note PACE authors were involved in developing this Oxford criteria.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 interactions 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, 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:
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 Psychiatrists who run CFS/ME services in this country:
https://bit.ly/2rZ7587 https://bit.ly/2I8N09w
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. 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:
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 M.E. and Me, an open account of the personal struggles of a British doctor who fell sick with ME:


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.

 

That is a brilliant letter. I hope that it has some effective results.
Since I'm not on facebook can someone explain where is this letter posted and who might be reading it.
Also, from the letter it seems that the point is education and not some other specific actions?

 

I have shared this on parent' s groups and there are mixed views . Some are concerned re tone- it is a bit too " in your face" for them and have tweaked it. Some simply can' t rock the boat at all.
Some have had ok experiences given limited treatment options available.
The content is good .

So it boils down to personal experience and confidence re sending it.

I don' t know if anyone has considered sending it to the press in some form as an open letter ( the issue may be getting it published) . It may have wider effect.

 

Yes, I have problems too. It's just not clever enough. We shouldn't leave doctors feeling aggravated and attacked.

It needs to be smarter than this: pointing out that doctors want the best for their patients; that clinical practice is lagging behind the science; that new evidence suggests GET is harmful; that we earnestly implore them to support us.

I think this may cause an entrenchment of existing viewpoints, rather than encouraging doctors to open their minds and empathise with patients.

 

Yes, I'd agree with the observations about it being too antagonistic, and also agree with the distaste for the "ME isn't CFS" argument, for the reasons Adrian gives.

Antagonism isn't necessarily bad but it needs to be, in my opinion, in the right context. In, say, a public protest, as one example, strong, unequivocal messages are probably going to be the most useful, and they are likely to be antagonistic, but when writing a letter such as this you need to explain and educate, not attack and threaten.

 

There are often things I disagree with in things like this, but judging this as just a letter put together by parents, I think it shows that advocacy efforts are in a much better place now than they were a few years ago. For people who haven't been able to properly investigate every detail, just linking to Tuller's work seems a good idea imo. Even the 'ME is not CFS' stuff, which I tend to think is often unhelpful, focussed specifically on the problems with Oxford and the criticism from AHRQ (unless I missed something else - feel a bit fuzzy). Being able to link to the Journal of Health Psychology is useful.

I also see room for some justified antagonism from parents, and this is not over-the-top here imo, even if I can also see why a different tone might be ideal: taking a range of approaches on this can be useful.

The prejudices around ME/CFS advocacy mean that we need to push for really high standards, but by the standards of the patient/parent advocacy efforts I see outside of ME/CFS, this does a good job imo.

 

I have several problems with this but I don't want to post too critically about it. There's clearly been a lot of work gone into this out of justified desperation and anger. It's good that it is referenced. I hope it has a good effect wherever it goes, or at least that doctors give it the time it needs to understand some of the issues. Children and families deserve so much better and there needs to be a lot more advocacy around the issues that children with ME face

It's a shame that some of the links are given without saying where they lead to. They say they hope people will print it out and send/deliver it to paediatricians so it's intended to be a print version. I think it's quite onerous for the recipient to type those links and follow them; there are so many of them. I don't know how many will bother when they might have investigated further if the format were easier, or the whole thing shorter. Doctors are busy, even if they're not prejudiced against reading an unsolicited 'scorching letter' from unknown parents about ME/CFS. Just my view though and I hope parents get together more for child focused advocacy.

 

I agree. I'm sorry but I think this is an ill-advised and poorly put together document. I have to say that I am surprised that Dolphin is circulating it.

 

I think the authors have done very well to hold back the absolute fire and fury they must want to unleash on those who are complicit in harming their vulnerable children.
Let's not judge, we aren't walking in their shoes. We don't know how hard they're having to fight or the extent of the threats they are facing.

 

I agree that parents have every right to be angry. What worries me is that this will have the opposite of the desired effect. It is not well argued and relies on flimsy evidence from weak citations. Criticism of PACE and adolescent studies is appropriate but to be convincing needs to be well argued. I think paediatricians will take this letter is confirming their suspicions that parents do not really understand the science and are reacting emotionally. That to me is an own goal.

It makes me ponder about why it is that there are so many sources, including ones from what ought to be authoritative organisations like charities and IOM, that are encouraging patients and carers to put arguments together in this way. The arguments against GET are cast iron, but they are not quite the ones in this letter.

 

I agree, there are positive elements to the letter but I think that what Doctors want is good evidence (which exists) and not links to self-published books on amazon or cartoons (which I actually found a bit confusing). The letter could probably be more concise and better evidenced. I agree with @Jonathan Edwards .... where are the charities who could be providing a simple and up to date letter template? I don't know ... perhaps other, similar, resources exist?

 

I saw that letter earlier. I applaud their intentions, but I won't be sending it to our paediatrician or any others at the hospital. For all the reasons mentioned above. I think giving them a copy of MEA's purple book with various pages bookmarked and a link to the paediatric primer is much more constructive.

 

I was a parent of a child diagnosed with ME.

The young man I care for ceased being under the care of a paediatrician 15 years ago. But if he were still a child there is no way I would have considered sending this letter to paediatricians, myself.

Nor would I have been comfortable if other parents of children with ME or if people who were not parents of children with ME were being encouraged to send it to paediatricians.

When the person I care for was in the system, children with ME would be under the care of a paediatrician, but may be seen at 6 monthly hospital follow up appointments by the paediatrician's senior registrar or by a more junior member of staff. A clinic nurse and sometimes a trainee medic would sometimes sit in on appointments. They may also have been required to have appointments with the community paediatrician or "school doctor" every few months. There will have been a Multidisciplinary Team (MDT) discussing the child's case after follow up appointments. After a routine appointment, letters were sent to the child's GP, to the community paed, to the school's EWO and SENCO, and sometimes the school's head. If the child was in receipt of LEA home tuition, the LEA would also receive a letter sanctioning the continued provision of home tutoring. CAMHS, social services and OTs may also be involved in the case. It was not unusual for a dozen or more individuals to have involvement in the child's case.

Most hospitals will have a team of paeds and one or two of them will be designated as having child protection responsibilities.

A considerable number of people have input into a child's case and it only takes one of those to red flag a case file.

 

Then what is the purpose of its message?

I pasted the text of this letter into a Word document. Without the images, it was over four pages long. Are paediatricians going to plough through five or more pages of material sent to them, in some cases, by random members of the public, and possibly having already received duplicates? I don't think so.

"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)..."

"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..."


As @Jonathan Edwards has said, it needs to be well argued.

 

@Dolphin As you are also flagging up this letter on Twitter, what is your position on this letter and its content, in the context of its target audience?

 

I am going to stick my neck out here. I looked at the new edition of the purple book this weekend. Although it is unintentional I think the presentation may tend to encourage people to go down the sort of line of argument in the letter here. There are masses of references to scientific papers that probably do not add up to much. What paediatricians will respond positively to is a completely neutral presentation of quality evidence.

I think if we want doctors and health care professionals to have the humility to admit that we do not understand the illness or what specific treatments to advise (as some have) then patients and carers need similarly to admit that, and not try to persuade doctors that things are known when the evidence is flimsy. I would focus on the fact that there is no scientific or evidential base for GET and the fact that it makes people feel ill is enough to make it inappropriate to recommend it.