MEpedia articles on neck surgery for ME (CCI, AAI, chiari, stenosis) and intracranial hypertension

MSEsperanza

MSEsperanza

Senior Member (Voting Rights)
Moderator note: This post was copied, and subsequent posts discussing it, have been moved from this thread:
Biomedical articles on MEpedia - purposes and pitfalls
Discussion of MEPedia policy on its science articles and what should be included continues on that thread.

Anyone feeling up to edit some of the pages recently cited with regards to the 'CCI-ME' story?

https://www.me-pedia.org/wiki/Craniocervical_instability
https://www.me-pedia.org/wiki/Intracranial_hypertension

Perhaps at least add links to the discussions on S4ME?
:ill::(
 
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MSEsperanza said:
Anyone feeling up to edit some of the pages recently cited with regards to the 'CCI-ME' story?
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I think they should be taken down. We have no good reason to think CCI or intracranial hypertension are relevant to ME/CFS and lots of reasons for thinking they are not. the material on the CCI page comes from the opinion of a small group of surgeons and is not the general view.

There is a specific error on the CCI page suggesting that there may be symptoms from CSF blockage, which might be relevant to intracranial hypotension but not CCI. This confusion is presumably the basis for thinking that the two are somehow similar or connected. They are not.

The whole thing looks to me like garbled disinformation.
 
MSEsperanza said:
Anyone feeling up to edit some of the pages recently cited with regards to the 'CCI-ME' story?

https://www.me-pedia.org/wiki/Craniocervical_instability
https://www.me-pedia.org/wiki/Intracranial_hypertension

Perhaps at least add links to the discussions on S4ME?
:ill::(
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I think it's too soon to edit. Emotions are running high and I have seen all sorts of logical errors in the discussions, even from people who generally have good logic.

I would wait a while until things have settled down, and people have had a chance to process all this.
 
The article on Craniocervical instability has been significantly re-written.
As a non-expert I can't tell if it's any better. It has a lot more scientific sounding content, and lots of references.
https://www.me-pedia.org/wiki/Craniocervical_instability
It includes this section:
Mechanical basis theory
Some ME/CFS patients diagnosed with CCI report to have experienced spectacular improvements and even remission of their ME/CFS symptoms following OCF-surgery.[31] They speculate that mechanical compression of the brainstem due to CCI has the potential to cause characteristic ME/CFS symptoms such as post-exertional malaise[32], although this theory is currently not supported by scientific evidence. Others have raised concerns about CCI surgery in patients with ME/CFS given the lack of research on OCF in this patient population.[33]
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The three references listed for this section are one of Jen Brea's blogs, Jeff's blog and the S4ME thread that starts with Michiel Tack's blog.

This section is problematic for two reasons:
1. It does not make it clear that, as far as I know, applies to only two patients (Jen and Jeff) who had the surgery more than 6 months ago) so saying 'some patients' is misleading.
2. It violates MEPedia's own science artlcle guidelines, since the sources of the information are anecdotal, not published peer reviewed science.
...............

I said a few days ago that I thought the article as it was then should be removed immediately.

Given the level of interest in the topic now in the ME world, it may actually be better to have an article on MEPedia about this topic. BUT it needs to be accurate and make it absolutely clear that CCI etc., as far as is known scientifically, has no relevance to ME.

Edited to add link
 
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Trish said:
Given the level of interest in the topic now in the ME world, it may actually be better to have an article on MEPedia about this topic.
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Yes, I have been working on an update of the MEpedia page on craniocervical instability in concert with Jeff and Jennifer (So that we don't get into a competition of deleting or rewriting each other's updates). It's difficult to find an accessible introduction to this subject, so I hope that ME/CFS patients looking for reliable information on CCI will be helped with this summary.
 
Michiel Tack said:
Yes, I have been working on an update of the MEpedia page on craniocervical instability in concert with Jeff and Jennifer (So that we don't get into a competition of deleting or rewriting each other's updates). It's difficult to find an accessible introduction to this subject, so I hope that ME/CFS patients looking for reliable information on CCI will be helped with this summary.
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Good to hear that.
Though I still don't really understand why MEPedia has a page on this at all, since there is no published research evidence of any link with ME.

MEPedia, in my opinion should not try to be a medical encyclopedia covering every condition every person with ME has or may have had.

Why not just a page listing conditions that may be of interest to pwME with links to reputable medical websites for more information?
 
Trish said:
Good to hear that.
Though I still don't really understand why MEPedia has a page on this at all, since there is no published research evidence of any link with ME.

MEPedia, in my opinion should not try to be a medical encyclopedia covering every condition every person with ME has or may have had.

Why not just a page listing conditions that may be of interest to pwME with links to reputable medical websites for more information?
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As you yourself said, "Given the level of interest in the topic now in the ME world, it may actually be better to have an article on MEPedia about this topic."

I could not find a reputable medical website that gives some accessible information about craniocervical instability and the possible risks of occipito-cervical fusion. If I google it, the results that show up are that blog post by the pain relief foundation that I've discussed on the other thread, EDS websites or the webpage of Vinc Gilete. All focus on CCI in EDS patients and do not really give a comprehensive overview (risks of surgery not mentioned).
 
Thanks @Michiel Tack.
I hope you will be able to find at least one expert in this diagnosis and surgery to check the accuracy of your page. It's not about trusting or not trusting patients to do their best to find accurate information. We have seen on this forum your thoroughness and determination to get things right, but as far as I know no-one writing for MEPedia has that level of expert knowledge.
 
I agree that it would be best if someone with medical expertise could check the info on that page, but I don't know if I will be able to find someone. Perhaps @Jonathan Edwards could take a look.

The post of the pain relief foundation was written with consultation of medical experts, but because they were the ones researching CCI in EDS, the article was a little biased in that direction. So consultation of medical experts is not a garantee of objectivity and accuracy, especially in areas that are controversial. Suppose an outsider would try to summarise the GET literature and look for an expert to check the information - there are many ways this could go wrong as well.

I also do not see why the ICC page would be any different from other MEpedia pages about other medical conditions or research in this regard. I suppose Wikipedia articles can be updated or written by non medical experts as well.

[EDIT: Readers also have the responsability to interpret the source they are reading, correctly. Much like you don't quote a wikipedia article in your thesis, you don't make medical decisions based on something that is written in a MEpedia article. They should consult medical experts for that.]
 
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I would be very happy to look at a draft @Michiel Tack.

Michiel Tack said:
Readers also have the responsability to interpret the source they are reading, correctly. Much like you don't quote a wikipedia article in your thesis, you don't make medical decisions based on something that is written in a MEpedia article. They should consult medical experts for that.
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The trouble is I don't think people can have a responsibility to make the right interpretation of material that is not representative of the evidence available if they do not know that. We do not have a responsibility to make the right interpretation of a Daily Mail article on bovine spongiform encephalopathy. People do make medical decisions based on things written on social media and the internet. Apparently at least seven people have. And they have consulted medical experts in the process - maybe the medical experts offering the surgery.

I don't think there is any valid disclaimer in this sort of situation. The responsibility is on the person writing the piece to make sure it fairly represents what is known.
 
Jonathan Edwards said:
I don't think there is any valid disclaimer in this sort of situation. The responsibility is on the person writing the piece to make sure it fairly represents what is known.
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This is true of course. But I still think it is important to have a disclaimer that it is not medical advice. Even when you get things right, people misinterpret or over-interpret based on whatever.
 
Jonathan Edwards said:
I would be very happy to look at a draft @Michiel Tack.
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The draft is what is online now: https://www.me-pedia.org/wiki/Craniocervical_instability

Jonathan Edwards said:
We do not have a responsibility to make the right interpretation of a Daily Mail article on bovine spongiform encephalopathy
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If a friend of yours is going to make a medical decision based on an article in the daily mail or on wikipedia, you will probably point out that these are not credible medical sources. There is a difference between what is in medical encyclopedia and textbooks and what is written in the daily mail where mistakes are much more likely. We can't demand that everything that is written on the internet should have the accuracy of a medical textbook, but we can point out to readers that they should learn to interpret their sources appropriately. That is what I meant with responsability of the reader. Similarly, If someone were to take something you casually said on this forum as a direct medical advice that would be a fault of that reader and his responsability.

IMO, MEpedia articles are intended to offer an accessible introduction to an ME related subject, a brief overview of facts and a collection of sources for further reading. Since MEpedia is still a project in its early phases with not that many contributors, people should understand there can be mistakes on the page and that the info provided is not of the level of a medical textbook.
 
dave30th said:
This is true of course. But I still think it is important to have a disclaimer that it is not medical advice. Even when you get things right, people misinterpret or over-interpret based on whatever.
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I agree that people will always misinterpret or over interpret but I doubt a disclaimer actually achieves anything - for that reason. There is no harm in a disclaimer but like most disclaimers, it does not in any way legitimately put a responsibility on the reader to interpret correctly.
 
Michiel Tack said:
Similarly, If someone were to take something you casually said on this forum as a direct medical advice that would be a fault of that reader and his responsability.
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No @Michiel Tack. It is my responsibility. That is a fundamental rule for a medical practitioner and I think in the internet-based world it should be a fundamental rule for everyone. It should certainly be a fundamental rule for people seeing themselves as patient advocates and disseminators of information.
 
Jonathan Edwards said:
No @Michiel Tack. It is my responsibility. That is a fundamental rule for a medical practitioner and I think in the internet-based world it should be a fundamental rule for everyone. It should certainly be a fundamental rule for people seeing themselves as patient advocates and disseminators of information.
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Do you really treat everything you say on this forum with the same diligence as when you give direct medical advice to someone? I suspect there must have been conflicts where your own opinion of the research on a medical condition (say EDS or POTS) conflicts with what the current consensus is?

I also think that crowdsourced information sources such as Wikipedia require some responsibility from the reader in interpreting the information provided. Otherwise, it would be nearly impossible for such platforms to grow.

I also think it would be difficult for non-experts to discuss medical issues because everything one says or every thought one expresses can be taken by someone else as medical advice. And if it's fully your responsibility if that goes wrong (instead of the person misinterpreting your blog post as medical advice) then only unresponsible people would be willing to say something.
 
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Michiel Tack said:
Do you really treat everything you say on this forum with the same diligence as when you give direct medical advice to someone?
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Yes, I spend ages thinking things over. It is something I realised I had to do when I first started contributing to the other forum. I spend a lot more time on this than I would have done with a single patient because this is an open discussion.

Michiel Tack said:
I suspect there must have been conflicts where your own opinion of the research on a medical condition (say EDS or POTS) conflicts with what the current consensus is?
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I don't think my opinion on EDS and POTS actually conflicts with the consensus. It conflicts with articles written by a small group of physicians, but it is a very small group, many of whom I know personally. I have been in touch with other physicians in relevant fields this week and they all take the view I take. This is the problem with the medical literature these days. In the 1980s consensus was shared right across medicine. Now that specialities are so isolated all sorts of fringe opinions grow up that dominate literature in a field.

But I was very aware that what I was saying about EDS would be unfamiliar to some people and I tried to emphasise that my main thought was that we do not have enough evidence to know. I was not trying to claim the existence of some new facts, but rather to point out that the facts are not established.

Michiel Tack said:
I also think that crowdsourced information sources such as Wikipedia require some responsibility from the reader in interpreting the information provided. Otherwise, it would be nearly impossible for such a platforms to grow.
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I simply do not understand how the reader has a responsibility for interpreting what someone else writes if they are not in a position to know how to interpret unrepresentative information.

Michiel Tack said:
I also think it would be difficult for non-experts to discuss medical issues because everything one says or every thought one expresses can be taken by someone else as medical advice. And if it's fully your responsibility if that goes wrong (instead of the person misinterpreting your blog post as medical advice) then only unresponsible people would be willing to say something.
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Exactly. I think it is about time the general public woke up to this responsibility. We think Phil Parker has this responsibility, as an unqualified member of the general public. Everyone has this responsibility. 'First do no harm' surely applies to everyone.
 
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