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

Trish said:
I think if I were going to send anything to my local paediatricians it would be the Paediatric Primer which has been published in a peer reviewed journal, is international, and focuses on diagnosis and treatment:
REVIEW ARTICLE
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full
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It is all very well to supply it - whether it is read is a completely different matter. Paediatrician didn't read anything, an did not engage in anything that was not a defined process, or potentially comorbid/other conditions.
My GP has a copy of both MEA book and primer, and is trying to support where she can - as we effectively have nothing here this is important. Although I do wonder if this would be different had there been " specialists".
 
@Dx Revision Watch as I worked with children with special needs in mainstream settings and as the daughter of a retired senior social worker I understand how the system works and wouldn't send the letter myself, but I defend the right of others to do so.

It concerns me that pwME and those caring for PwME are silenced by the system and then silenced again by their peers which can only compound harms.
If we want to bring about change then we need to keep up pressure for change. The quantity of voices demanding change has far greater impact than quality of argument - the tabloids win elections and get politicians unseated, not the broadsheets.
Silencing the 95% (figure plucked out of no-where!) who are arguing for change in a manner that doesn't meet our standards is an own goal.
I think if we want to control the debate maybe we should be writing template letters; if we don't approve of the way others are advocating then perhaps we should enable them to do it better?
 
I think that part of the reason that patients have been so powerless in direct advocacy in the past has been that not all groups have professional-level communications skills, which is important if you want to appear credible to professionals.

One of the strengths of #MEAction is, IMO, its intention of networking patients so that those with the passion can work with those with the relevant skills and create a good campaign.

I think we need more of that networking and working together, especially here in the UK, and I hope people will donate to the UK #MEAction fundraiser.
 
Amw66 said:
It is all very well to supply it - whether it is read is a completely different matter.
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That is a good point, but they might, as my GP did with the Purple book, at least put the Primer in their departmental library to be found if any of the paediatricians is seeking information to help a particular patient. Or it might just gather dust. A short letter with reference to the Primer might be more likely to be read and therefore more effective.

Liv aka Mrs Sowester said:
It concerns me that pwME and those caring for PwME are silenced by the system and then silenced again by their peers which can only compound harms.
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Liv aka Mrs Sowester said:
Silencing the 95% (figure plucked out of no-where!) who are arguing for change in a manner that doesn't meet our standards is an own goal.
I think if we want to control the debate maybe we should be writing template letters; if we don't approve of the way others are advocating then perhaps we should enable them to do it better?
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Part of the reason for setting up this forum was to enable open discussion of advocacy - either enabling people to use this forum to plan new advocacy actions and put them before members for discussion, or to discuss whether we think advocacy actions suggested by other pwme are likely to be effective, and share ideas on what might be more effective.

Nobody is being silenced by this discussion. It is enabling members to think carefully about whether this particular letter is likely to achieve its aim, and therefore whether it is an advocacy action they want to participate in.

Your suggestion of people here drafting a template letter that is more likely to have the desired outcome seems like a good one to me if there are people who want to work on this.
 
Liv aka Mrs Sowester said:
@Dx Revision Watch...It concerns me that pwME and those caring for PwME are silenced by the system and then silenced again by their peers which can only compound harms.
If we want to bring about change then we need to keep up pressure for change. The quantity of voices demanding change has far greater impact than quality of argument - the tabloids win elections and get politicians unseated, not the broadsheets.
Silencing the 95% (figure plucked out of no-where!) who are arguing for change in a manner that doesn't meet our standards is an own goal.
I think if we want to control the debate maybe we should be writing template letters; if we don't approve of the way others are advocating then perhaps we should enable them to do it better?
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As Trish says: Nobody is being silenced by this discussion.

Given the work I do on terminology and classification systems, I do not have the time to assist in the drafting of template letters. I don't consider template letters are necessary appropriate, either, in this situation. But that is not going to stop me criticizing what I consider to be an ill-conceived and not well executed initiative.
 
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I read the letter and the pain and anger of the parents who wrote it moved me and I do understand why parents see a powerful need for change in the way so many children with ME are treated - we all share that wish.

My heart is with the parents who wrote this letter, but my head says, this particular action is not for me.
 
Liv aka Mrs Sowester said:
@Dx Revision Watch as I worked with children with special needs in mainstream settings and as the daughter of a retired senior social worker I understand how the system works and wouldn't send the letter myself, but I defend the right of others to do so.
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But what is being asked for in this initiative is for anyone to send that letter to any paediatricians.

"We are writing to as many Paediatricians as we can..."


From the Facebook page:

" 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 is a scattergun exercise calling on random members of the public to bombard clinicians with a copy of a communication and suggests it is done anonymously - so no accountability for its content or for any additional content that might be included along with the original letter.
 
Jonathan Edwards said:
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.
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Without commenting on the letter itself, I'm not quite sure I agree with this point. Paediatricians, doctors and even researchers often seem as likely to respond positively to dodgy research as sufferers and senders of letters themselves. Following my appointment and diagnosis at the university hospital in Berlin I was send a 4-page letter full of advice on possible treatments which had been found to help some people blah blah. I looked up some of the studies that were referenced, and a lot of them did not add up to much (small sample size, flimsy evidence, or blatently dodgy) yet they were still translated into advice the well-known and well-respected researchers at the Charite were happy to put the immunology department's name to.

Quite a few times I've been disappointed to observe that many medical professionals can be as subject to the same biases and strange beliefs as we mere mortals when I assumed they would have known better. There's a doctor in my village who is wonderful in an emergency and was a great help to us when a family member had an accident. She has a sideline swinging pendulums and crystals over people (which has to be paid privately, of course). No ill intent, just seems good at compartmentalising and as susceptible to bullshit as anyone else despite her medical training.

Agree a completely neutral presentation of quality evidence is best. But evidence that falls below that standard may not do so much harm. Depends on who it's being sent to and what they want to believe. I have some reservations about the letter in this case, but if it is sent on a scattergun approach and lands on the desk of one paediatrician who has been sent a child with ME, and that paediatrician has an ounce of humanity and an interest in their subject, it may save that child even if it only makes the paediatrician aware that there is an alternative viewpoint to the official line.
 
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This thread has also made me think about how advocacy mustn't only be for the cleverest of us, especially when one considers that ME affects people cognitively.
Hearts and minds need winning over, if a logical argument could win this battle we'd have won years ago, maybe more emotion is what's needed at this point?
Keeping up pressure is vital as is keeping ME in everyone's minds as much as we possibly can. As long as no-one crosses lines into abuse, harassment or illegality I'll support their right to it.
 
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Dx Revision Watch said:
This is a scattergun exercise calling on random members of the public to bombard clinicians with a copy of a communication and suggests it is done anonymously - so no accountability for its content or for any additional content that might be included along with the original letter.
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I must say, anything I receive anonymously goes straight into the bin.
 
Liv aka Mrs Sowester said:
Hearts and minds need winning over, if a logical argument could win this battle we'd have won years ago, maybe more emotion is what's needed at this point?
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Dear @Liv aka Mrs Sowester,
If it were a matter of reaching out to ordinary people I can see that make sense. But my concern here is a purely pragmatic one. Parents reaching out to paediatricians emotionally is pretty guaranteed to confirm the paediatrician's prejudice that the BPS people are right and parents are over-emotional. All paediatricians either have this prejudice to start with or they are already converted to the cause. Neither group is going to be won over, I fear.

I think this is what people call playing the ball not the man. If you want to achieve something it is important to keep in mind the best method of achieving it, not to be sidetracked by scoring points against enemies.
 
I think it is important that we all do what we feel is right as individuals. I will support a group action if that fits with what I think, but I don’t like emotional arguments being used to try to make me feel that I’m somehow wrong or not supportive of other people if I don’t want to support something.

We learn and adapt by critical reflection - and I value this forum for the critical thinking and discussion that goes on here. We are never all going to agree and that’s ok. I think there are aspects to the current ME advocacy that are probably harmful to our situation - but that’s just my opinion. Perhaps as things improve, some of those differences will iron out... If we can get some really good quality evidence, then I think we will stop scrabbling at the crumbs to try to fight our corner.
 
Skycloud said:
...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.
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Leaving aside the content, there are in the region of 36 links in this document, which the authors are suggesting is printed off and sent to paediatricians or handed in at hospitals' internal mail systems by parents or non parents, known or unknown to the recipients of this material.

So the authors are expecting a busy paediatrician to open a letter (that has been sent or delivered, probably anonymously) which runs to five or so pages of A4, which contains 36 URLs, many of which are bit.ly links that could point anywhere...
 
Liv aka Mrs Sowester said:
This thread has also made me think about how advocacy mustn't only be for the cleverest of us, especially when one considers that ME affects people cognitively.
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Also, I expect none of us are well informed enough to really understand all the details of the problems around ME/CFS, no matter how smart we may be. It's a real mess, so we're all going to have to try to help each other out to make progress as effectively as possible.

There could be a danger of creating some group-think on what approaches will be counter-productive. I know that in the past there have been advocacy actions that I thought were misguided and would back-fire on us, but they ended up probably being useful. At the same time, there have been some attempts at advocacy that I think really have been counter-productive.
 
Jonathan Edwards said:
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.
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Would you say there is sufficient evidence to assert that the condition is not mental or psychogenic? Or maybe such can't be verified or falsified? Just curious.
 
James Morris-Lent said:
Would you say there is sufficient evidence to assert that the condition is not mental or psychogenic?
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There is sufficient evidence to assert that there is not sufficient evidence to assert that the condition is mental or psychogenic. If anyone wants to claim that the condition is mental or psychogenic, or that there even is such a thing as a psychogenic illness, then it is up to them to provide evidence for that claim, and until they do there is no reason for anyone to believe that it is, let alone have to falsify it. So far what the BPS brigade have provided don't amount to a hill o' beans.
 
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