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

This.

 

[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.

 

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).

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.

...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?

 

And the only food plant of the larvae of the wonderful and common cinnabar moth.

 

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.

 

But that doesn't help the poor beggars who become the subject of "the harms".

 

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.)

 

subject to the normal provisos as to informed consent

 

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...

 

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.

 

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

 

has anyone directly contacted any of the people on @Jonathan Edwards list?

 

Bjorn Bragee has been contacted and responded.

 

Which was a great bonus.

 

Is his response confidential or has it been shared somewhere else?