A request to those involved in ME research to indicate their position on spinal surgery

James Morris-Lent said:
It's about the fighting for the ethos of the ME research space. Standing up and saying that we need people to adhere rigorously to scientific principles. . .

. . .It needs to be established that people are expected to make sense. Researchers should not hesitate to fully criticize ideas just because they are 'biomedical' - in fact, this criticism should be expected and demanded by patients and fellow researchers.

Of course this is to prevent people from wasting resources on ideas that never really made any sense. But also this seems necessary for ME research to be taken seriously by and thus receive the most useful support from government agencies and other potential funders and scientific partners.
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This.
 
Jonathan Edwards said:
Yes, that gives us their view on the possibility of spinal problems being relevant. I think they are fence-sitting a bit but I MvE is making sensible points.

But this is not the issue I am asking them to comment on - which is that of material being put out that I believe is unwarranted and irresponsible.
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[my bold]

This is the crunch point that people need to take up in Jonathan's statement. Even though clearly stated people still seem to assume a different point is being made, possibly borne of their own bias.
 
Jonathan Edwards said:
Pish, there is nothing difficult about pointing out that teenagers should not be having unnecessary operations that leave them unable to turn their head for the rest of their lives. I really don't understand the idea that this is a small problem. Just one young person's life being wrecked justifies getting something done.
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cassava7 said:
This issue is compounded by the amount of attention given to the claims that spinal surgery is safe enough and enables substantial improvement or remission from ME, promoted by high-profile people in the ME patient community on social media using their own anecdotal reports of improvement following spinal surgery (as well as further claims of unproven hypothetical links between ME and spinal problems).
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I agree. These are extremely worrying developments. As for casting us as fruitcakes – well, we're used to that, and the number of doctors suffering from 'long' Covid has shifted the debate anyway (at least for now).

MSEsperanza said:
In Germany, crowdfunding for spinal surgery is a major issue. PwME who crowdfund are being portrayed in the media and the "It's all in the spine"- story is taken seriously by journalists.
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This is what I actually began my post to say. 'Life-changing surgery' has an appealing glamour that persuades many people to donate to crowdfunders, especially when the friends of a severely ill patient promote it on social media in the sincere belief that it will help them. The fact that 'life-changing' has more than one meaning isn't mentioned.

Peter Trewhitt said:
One of the few plants in the UK that is a pernicious weed by act of Parliament. Each local authority is meant to have an officer responsible for addressing its suppression and to ensure land owners are removing it.
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...an aside, but as it's only a problem in meadows cut for hay and is a very important plant for our insects, it's not always seen as a bad thing. Farmers whose livestock is at risk have to deal with it, of course, but it's often allowed to grow freely on nature reserves and wild patches where the grass isn't sold as hay; the ponies and cattle that graze them dislike the taste of it anyway when it's green. My local patch has lots of it in high summer, and it's always buzzing with bees and hoverflies and crawling with soldier beetles.
 
When the very first posts started appearing on forums about CCI, my gut reaction was that this would end up being a bigger public relations disaster for us than XMRV. Everything that's happened since has only reaffirmed my view on this.

Ironically, this sort of "advocacy" will ultimately increase medical abuse, neglect, malpractice and conversion disorder diagnoses, the very things that Brea thinks she is campaigning against.
 
I suppose it is possible to see this as an ultimately self-limiting problem. If the harms are great enough the insurance industry will in due course make the procedure unviable. It then becomes a question of how much do we care about those who will sustain injury before that happens.

Is anyone prepared to say they don't care?
 
chrisb said:
I suppose it is possible to see this as an ultimately self-limiting problem. If the harms are great enough the insurance industry will in due course make the procedure unviable.
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Until quite recently I thin this was a reasonable assumption on the basis that over the decades most countries have gradually moved to a more rational and responsible approach to health. Unfortunately in the last four or so years there have been signs that things are moving rapidly in the opposite direction in a number of countries - with seemingly quite different backgrounds.
 
chrisb said:
I suppose it is possible to see this as an ultimately self-limiting problem. If the harms are great enough the insurance industry will in due course make the procedure unviable. It then becomes a question of how much do we care about those who will sustain injury before that happens.

Is anyone prepared to say they don't care?
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But that doesn't help the poor beggars who become the subject of "the harms".
 
cassava7 said:
While this is the purpose of Jonathan Edwards’ request, research is not — and should not be — the primary concern here. The primary issue is the safety of patients who may be harmed from spinal surgery, a high-risk treatment with no evidence of acceptable safety or efficacy for ME (symptoms).
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I would say that the consideration of patient well-being, broadly conceived, is the concern of ethical medical research.

It's up to the ME research community to peer-review the ideas that circulate, and in large part it is up to the prominent voices in research act as effective sense-makers for patients and carers. Because nobody else is going to do it.


I would certainly agree that the present circumstance is rather alarming. However there is some danger in missing a greater point by fixating on medical risk just because it is particularly viscerally striking in the instance of spinal surgery:

- Even if something is not seen as 'medically risky' there are still bound to be profound costs in the long run for patients when bad ideas and pseudoknowledge are allowed to take up space and resources over an indefinite timespan without getting seriously criticized by the research community.

- Significant risks to a group of patients can be acceptable for the greater good of all current and future patients but this requires that a proper experiment be set up to produce real knowledge.
The cyclophosphamide study comes to mind. It seems that the nature of cyclophosphamide is such that there is no way that it can be a viable long-term treatment option. And it is being studied on the basis of anecdote. However, we trust Fluge and Mella to run a proper study so that at least we will have gained relevant knowledge at the end - and that the end will be the end unless some other investigation is warranted. (Honestly from what I know I couldn't really say if the cyclophosphamide study should have been carried out, but at least it will be a proper experiment.)
 
Should Science for ME also make a public position statement on this issue?

If we agree that we are worried about recent developments (and I'm not assuming that everyone does agree, of course), then there might be an argument for it – especially as it's likely there will be a cohort of new patients searching for reliable information. Someone recently diagnosed may struggle to read through lengthy threads, even assuming they click the relevant ones in the first place.

On the other hand, as advocates rather than researchers or physicians, it might not be our place to do so. I can't decide, hence the suggestion...
 
Sid said:
When the very first posts started appearing on forums about CCI, my gut reaction was that this would end up being a bigger public relations disaster for us than XMRV. Everything that's happened since has only reaffirmed my view on this.
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Google will tell you that is not the case, this is not something that the public is largely aware of. I did a Google Trends search for keywords "CCI" and "craniocervical instability", result for the latter in this link. There are two peaks, which maybe coincide with some blog posts of Jen. However, those numbers are only relative, so the relevant bit is to compare the peak interest and recent interest with the interest a couple of years ago. There is very little increase. Contrast that to XMRV trend search (link), where you see a hundred if not thousandfold increase around the time Mikovits started coming up with her nonsense in 2010 (I discarded 2020 as there was another peak with the COVID-19/XMRV conspiracy). I'm afraid any statements etc. will just draw more attention to the matter and possibly even attract more people to look for surgeries, it will become the new hydroxychloroquine of ME/CFS, where the debate isn't about the data anymore.
 
@JES I don't think the point is the comparison with XMRV in terms of interest in the wider pubic - that was generated by published research and media interest in it.

The point here is that it is becoming very widespread among people with ME.

Many thousands of ME sufferers are being misled into believing CCI surgery is a proven cure for ME. And instead of being warned that there is no research evidence to make the connection, there is a vigorous social media campaign to entice people into closed facebook groups, where they are told who knows what by people without medical knowledge.

And apparently lots of people are going to doctors saying they think they need spinal surgery to cure their ME.

All this happening without any research to back it up, and some people being harmed by the surgery.

We are a science based forum. That means we must criticise without fear or favour any action not backed by science that has the potential to harm people with ME.

It seems to me reasonable to ask scientists and physicians involved in ME research to state publicly their position on this. The are not being asked to criticise any individual, but to make it clear to the wider ME community that this campaign is not backed by science.
 
Jonathan Edwards said:
Just one young person's life being wrecked justifies getting something done.
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I couldn't agree with this and with the general sentiment expressed on this thread more. I find it very worrying and I really hope that researchers do respond and make their positions clear.

It's really difficult as a non scientist/medically trained sick person to wade through all the info that's being put out and it can be very persuasive. It can be easy to forget that there are other perspectives. Just one word of caution coming from a doctor/researcher can make a big difference. I'm very grateful to this forum for providing balance, without it I think I would be totally overwhelmed by all the CCI info.
 
There have been calls for clinicians and researchers to declare that they agree that disseminating claims linking ME/CFS to spinal problems requiring surgery is unwarranted and irresponsible. But shouldn't this forum also state its position?

Could a membership vote be held in support of a management statement setting out the forum's position?

Moderator note: This post has been copied and discussion moved to a new thread here
 
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