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

[Jonathan Edwards]

Drs Nancy Klimas and Michael VanElzakker's positions, from the Invest in ME Research 2019 conference

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.

 

[Jonathan Edwards]

any reason Chris Ponting is not on the list?

The list is not intended to include pure science researchers like Ponting who would not want to express an opinion because it is nowhere near their field of knowledge. I have included some non-physicians, yes, but they tend to be people who actively promote theories of causation of ME and form the 'expertise community' for ME. Chris is really only dipping his toe into ME from his position as a general geneticist. I have excluded people working in metabolic labs for much the same reason, although I admit that the list is just thrown together as names came to me.

 

[Jonathan Edwards]

@Jonathan Edwards: in a similar vein as @strategist's question, could you please clarify your request?

I actually think, re-reading, that my request was perfectly clear and on target. People will misconstrue it. I guess that also tells us something.

But the reality is that there are absolutely no plausible links between ME and brain stem compression. At least no more than between ME and having ragwort growing in the garden - if anything less because we know the clinical picture of brain stem compression and it is not ME.

Sorry but rubbish is rubbish. I am too old to bother with beating about the bush.

 

[rvallee]

I'm not sure this is worth all the oxygen it's being given. Nobody pays attention to this outside of the most active members of a reliably ignored community. This is really an obscure concern that seems larger than it is because we pay attention to it. There are tens of millions suffering this disease, a few dozen people's opinion, no matter how prominent, does not mean much.

If the concern is that this will be used to disparage us or discredit ME, it's happening no matter what and the substance of disparagement is entirely superfluous, these people don't say what they or mean what they say, they will bullshit anyway.

 

[Dx Revision Watch]

I'm not sure this is worth all the oxygen it's being given. Nobody pays attention to this outside of the most active members of a reliably ignored community. This is really an obscure concern that seems larger than it is because we pay attention to it. There are tens of millions suffering this disease, a few dozen people's opinion, no matter how prominent, does not mean much.

If the concern is that this will be used to disparage us or discredit ME, it's happening no matter what and the substance of disparagement is entirely superfluous, these people don't say what they or mean what they say, they will bullshit anyway.

It's not an obscure concern, given she uploads images of her scans to people like Prof Michael Sharpe.

She's now "reaching out" to Dr Tedros Ghebreyesus, the WHO's Director-General. What if she starts plying him with her CCI theories?

It's not an obscure concern if her multiple platforms encourage patients to seek out a diagnosis of CCI or undergo surgery. Or undergo surgery and die or are left in a worse state than they were before.

 

[JemPD]

given she uploads images of her scans to people like Prof Michael Sharpe.

Oh my God, she does not!!???

Thanks Jen, thanks very much

 

[JES]

Oh my God, she does not!!???

Thanks Jen, thanks very much

Given that Michael Sharpe already feels the need to go public regularly about his harassment by vexatious ME/CFS patients suffering from hysteria/MUS/somatization, I don't see what difference it does make . I agree with @rvallee, I think this thing is a bit overblown. You cannot really stop Facebook communities and such. There are what, three neurosurgeons in the entire world that do these operations, surely it would be easier to contact them and have them explain on what basis they do their operations rather than to try and stop social media movements.

 

[rvallee]

It's not an obscure concern, given she uploads images of her scans to people like Prof Michael Sharpe.

She's now "reaching out" to Dr Tedros Ghebreyesus, the WHO's Director-General. What if she starts plying him with her CCI theories?

It's not an obscure concern if her multiple platforms encourage patients to seek out a diagnosis of CCI or undergo surgery. Or undergo surgery and die or are left in a worse state than they were before.

It's still just dozens of people. Nobody pays attention to us even on things fully backed by evidence, I simply see no scenario in which this is a cause for concern, where good things start happening but someone whips out a powerpoint presentation of CCI stuff and a group of people about to make decisions just decides, "oh, well, this clearly changes everything, shut it all down".

We are a tiny bubble here, nobody pays attention to us. Yet. Once they do, millions of people, decades of failure and the wider relevance to COVID-19 will be pertinent, not what dozens of people are saying. Jen is influential in the ME community but that doesn't get out and MEAction is bigger than this. We just perceive it more, others don't see any of this, let alone care.

I'm just saying it's not really worth the energy, main because it distracts from important things.

Or put another way:

 

[cassava7]

I actually think, re-reading, that my request was perfectly clear and on target. People will misconstrue it. I guess that also tells us something.

But the reality is that there are absolutely no plausible links between ME and brain stem compression. At least no more than between ME and having ragwort growing in the garden - if anything less because we know the clinical picture of brain stem compression and it is not ME.

Sorry but rubbish is rubbish. I am too old to bother with beating about the bush.

Re-read too with less brain fog and yes, the wording of your request is clear:

disseminating claims linking ME/CFS to spinal problems requiring surgery is unwarranted and irresponsible

There are in fact multiple issues at play:

1. Unproven claims of etiological links between ME/CFS and spinal problems
2. Unproven claims on the safety and efficacy of invasive surgery as a treatment for ME/CFS
(3. Unproven claims of etiological links between mast-cell mediated events and spinal problems)
4. Public promotion of 1., 2. (and 3.), which disregards due caution when addressing these topics within a community of patients who are susceptible to trying out this treatment (out of belief into these claims, due in part to desperately wanting an improvement of their condition).

These are all major problems.

EDIT: More specifically, the above should read “These are all major problems, especially 2., for vulnerable and thus susceptible patients”.

People who would not benefit from these claims may more easily see through them and discard them (e.g. someone not ill with ME). Only the issue of lack of scientific validity is relevant to them.

For patients, this issue is only second to the risk of harm that these claims can cause. Countless medications, surgeries, therapies, products (e.g. supplements) without rigorous evidence of safety and efficacy have been (under)taken by patients who think they may benefit from them will try them. We know that many of them have had a significant deterioration as a result.

(This is not specific to ME — the greater the severity of a disease, the more likely it seems that greater risks will be taken to improve quality of life. Spinal surgery currently seems to be reserved to people with severe ME symptoms, hence the elevated concern of harm.)

 

[James Morris-Lent]

I'm not sure this is worth all the oxygen it's being given. Nobody pays attention to this outside of the most active members of a reliably ignored community. This is really an obscure concern that seems larger than it is because we pay attention to it. There are tens of millions suffering this disease, a few dozen people's opinion, no matter how prominent, does not mean much.

If the concern is that this will be used to disparage us or discredit ME, it's happening no matter what and the substance of disparagement is entirely superfluous, these people don't say what they or mean what they say, they will bullshit anyway.

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.

At the moment it seems that a lot of things are let slide because at least they aren't BPS. This is understandable because (1) BPS still has a lot of influence and has long been the main fire that people have been fighting to put out (2) it's significantly more difficult for lay patients to evaluate biomedical theories/speculations because, unlike BPS, there may be actual technical expertise required.

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.

 

[Trish]

Some posts have been moved to more relevant threads:
Concerns about craniocervical instability surgery in ME/CFS
Structural spinal problems and ME - blogs and social media

 

[Esther12]

It's still just dozens of people. Nobody pays attention to us even on things fully backed by evidence, I simply see no scenario in which this is a cause for concern, where good things start happening but someone whips out a powerpoint presentation of CCI stuff and a group of people about to make decisions just decides, "oh, well, this clearly changes everything, shut it all down".

We are a tiny bubble here, nobody pays attention to us. Yet. Once they do, millions of people, decades of failure and the wider relevance to COVID-19 will be pertinent, not what dozens of people are saying. Jen is influential in the ME community but that doesn't get out and MEAction is bigger than this. We just perceive it more, others don't see any of this, let alone care.

I'm just saying it's not really worth the energy, main because it distracts from important things.

Or put another way:

I've got some sympathy with that, but also, I think I could be underestimating a problem just because I don't spend time in the group where it's being promoted.

If Brea is promoting claims about MEspine in an ME Action group for post-covid patients that she helps run, that's quite bad. I've felt like some people can be unfair on Brea previously but I am becoming more and more worried about some of the things I've seen, though I only see scraps of what happens on social media.

I've also got sympathy for the difficult position those at ME Action are in with Brea becoming evangelical about risky experimental surgery and (to me) implausible claims. I think ME Action do a lot of good work and don't want to see attempts to raise standards for the evidence needed before risky medical claims are made to patients undermined by their figurehead having worryingly low standards. I also see that it's hard for them to act as if they have any right to restrict what Jen says as a private individual (I'd assume she's not being paid by ME Action), particularly in America where there's a stronger cultural commitment to freedom of expression.

OT, I think it's worth considering why ME Action and Brea ended up with a lot of influence and a platform - imo the way that they focussed on reaching out to people and promoting positive messages was more effective than my (and others) tendency to focus on criticising people doing worrying things. There's probably a lesson to be learnt there, even if I might be too old to change my ways.

 

[Hutan]

But the reality is that there are absolutely no plausible links between ME and brain stem compression. At least no more than between ME and having ragwort growing in the garden

Ragwort a pernicious weed.

 

[Peter T]

Ragwort a pernicious weed.

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.

A shame we don’t have officers responsible for suppressing the equivalent in science.

 

[Milo]

A shame we don’t have officers responsible for suppressing the equivalent in science

Ironic maybe but there is, Science Media Centre.

 

[Jonathan Edwards]

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.

Yes, this is the motivation. The size of the problem is secondary.

However, this is not a small problem. Hundreds and maybe thousands of children and adults are seeking advice on spinal surgery for essentially ME symptoms in the UK from rheumatologists and paediatricians. All the colleagues I have spoke to are aware of the problem and are frightened by it. But nobody has the guts to do anything about it. Some even think why not give it a try.

We have a peculiarly pernicious problem here because neurosurgeons are a respected branch of the establishment health care system. Their practices are accepted as sound. Yet what people forget is that neurosurgeons probably almost never do valid trials for what they recommend. In a strange way they are very like the liaison psychiatry people - allowed to do what they like because they are 'in the system; but without valid evidence.

 

[Jonathan Edwards]

You cannot really stop Facebook communities and such. There are what, three neurosurgeons in the entire world that do these operations, surely it would be easier to contact them and have them explain on what basis they do their operations rather than to try and stop social media movements.

The point is that is all the respected experts on ME stood up and said this is nonsense then I strongly suspect that the whole thing would dry up. Instead we seem to have so-called experts jollying things along. The idea of contacting the surgeons is silly - these people will do what they want - unless that is, their peers get together and say stop. I have asked the President of the British Society for Rheumatology to say that but he says 'it is difficult'.

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.

But to return to the main point. To take this spine stuff seriously if you actually have a medical training you have to be very stupid indeed. It is pure pseudoscience. I think it is time the ME community had the opportunity to see which of those who claim to be experts working for the community know what they are doing and which are very stupid indeed. It is quite clear to me that there are both. In other branches of medical research the very stupid people are shown up for who they are.

 

[cassava7]

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.

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).

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).

Even though these reports do not constitute evidence of safety and efficacy, and only indicate correlation — not causation — between ME symptoms and surgery, they are being depicted and interpreted by patients as such. In the sense that it increases their confidence towards positive outcomes and downplays the risk of negative outcomes.

For this point alone, this issue must be addressed. I agree with @rvallee and @JES that from the point of view of research, spinal hypotheses for ME are a hyped niche that most researchers will probably not explore. But patients are following through on these hypotheses, and this raises red flags.

 

[shak8]

I'm glad you're fed up, @Jonathan Edwards.

Pseudoscience is belief in the supernatural.

Patients, some of whom may be children, need protecting.

Let the smarter doctors give voice to the truth about the ME/CCI non-link.

No more games. It's should be a law to call junk medicine junk.

 

[MSEsperanza]

Thanks again for your iniative, @Jonathan Edwards . I hope at least some people you addressed will react in a helpful way.

To take this spine stuff seriously if you actually have a medical training you have to be very stupid indeed.

By this, do you mean medical professionals who take this stuff seriously disregard anatomical and physiological facts they should be aware of?

I think it doesn't help to call them stupid. They may be stupid with regard to this issue. We all have our stupidities. I agree that some stupidities are more harmful than others. Many people though will be even less willing to reflect their particular stupidities if they feel insulted.

Also, I agree that claiming that spinal instabilities or stenosis are causal for ME and getting rid of these issues by surgery can cure ME is an extremely harmful dismissal of facts.

This seems even more apparent when proponents of these claims continuously add new explanations why most people that underwent surgery need additional surgeries, repeated spinal leak treatment or treatment for MCAS, mold intolerance etc. or had relapses due to diverse additional reasons.

To me spreading these easily-to-disprove hypotheses and based on these, unwarranted hope, seems extremely harmful in terms of trustworthiness of ME advocates and ME science as well as with regards to patients with ME.

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.

Edited to add: I don't have a medical education, so don't know enough about anatomy and physiology to substantiate my critique with factual knowledge.

So what I agree with is not the part about anatomy and physiology -- because I don't have the expertise. I'm convinced though that (pseudo)scientific claims can also be debunked by pointing out inconsistencies and logical errors in reasoning, by pointing out over-/misinterpretation of cherry-picked references etc.

The errors of the latter category were pointed out by forum members on diverse threads. I think medical professionals should also be able to acknowledge these errors.

If they didn't sufficiently control for bias in their papers and talks about their hypotheses and their research they eventually should let themselves be alerted by the way their claims are interpreted by highly influential patients and patient advocates on social media and in newspapers -- all claims based on a handful of clinician scientists's publications in addition to another handful of neurosurgeons.