The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Well now one person has shown me a thread where my post containing the phrase "mass hysteria" has been completely misrepresented.

That twitter thread is a view of medicine from a political science perspective, with a bit of amateur psychology, discussion of motives and character of those asking legitimate questions, and name-calling thrown in.

 

Hi @TiredSam do not take it personally. I think that people in the forefront of this story are feeling the heat (Though i would not want to speak for them).

i think we should be able to discuss this respectfully and coherently and in my view, it is best to do this in a forum situation as opposed to Twitter. It’s been said before, we have to be careful conflating multiple conditions together and assuming that everyone has the same thing. I think it may well be the biggest issue that we face. And while we keep on discussing, it would be my hope that clinicians, those who are seeing patients with ME on a daily basis, would look into this in a scientific manner.

My 2 cents.

 

https://en.wikipedia.org/wiki/Gaslighting

So misquoting something one person said, and then conflating that to "other people with ME", would seem to fit within the definition of gaslighting to me. It certainly shows how ridiculous the conversation has got, I'll agree with that.

 

There seems to be some misunderstanding and/or misrepresentation that says we all at S4ME want to totally quash this whole thing, which is clearly not true - all one has to do is read the posts.

I think I speak for most of the flock here in saying that I'm genuinely curious as to what may be going on in people who report substantial improvement after this surgery, I just want things to be approached in a responsible, scientific manner.

I appreciate that inspired people want to bring energy to push investigation forward. However, it virtually always moves us further from where we would like to get when people proceed with great zeal based on the presupposition they already have all the answers because they knitted together some compelling-sounding hypotheses - (that are not even plausible in this case, according to Jonathan) - and act as if any questioning or criticism must be in bad faith and/or ignorant. Unfortunately, that looks to be what is going on and is apparently causing people to take some questionable actions.

As for us here, it does make me quite uneasy when people speculate about others' condition or experience, and I have seen a few comments of that nature that I have found off-putting. Let us just remember that nobody really knows what, physiologically, to make of what any CFS sufferer is going through.

 

Exactly. I think the reports of substantial improvement are enough to justify research in this area but I'm uncomfortable that suddenly a lot people are being diagnosed and treated as if there was near certainty when there actually is a lot of uncertainty. There are historical precedents like XMRV where such claims did not work out well in the end. Being aware of this and deciding to err on the side of caution is not being close minded.

I also find it concerning that the few doctors involved in this are almost entirely silent.

 

I initially felt very supportive of the way Jen Brea dealt with her treatment and remission but I've become increasingly uncomfortable as the months have gone on. Her initial decision to provide a detailed account of her journey to a CCI diagnosis and subsequent treatment did not seem to me to be to be an irresponsible thing to do. It was inevitable that people would start looking into this surgery once word of Jen's dramatic improvement got out, so I thought it was helpful for her to give individuals the information they needed to decide whether this was a diagnosis worth investigating in their own cases. I also appreciated the fact that she was willing to engage with the (understandably) sceptical voices that felt CCI/AAI could not possibly explain all the symptoms of ME and answer questions about her own experiences.

I started to feel concerned when she began posting her detailed hypotheses explaining how CCI might cause ME symptoms. This to my mind was not a responsible thing to do. At this point we simply do not know if CCI can cause ME - and even if there is some sort of connection we don't understand the mechanisms by which structural issues in the neck can result in specific ME symptoms. It is unhelpful and highly misleading to give the impression that we do and it can only foster the idea in patients' minds that they *need* this surgery if they are ever to be well, when at present we just don't know if that's true.

More recently, in the last few days, I've been extremely concerned to learn that a private Facebook group has been set up where people who are considering this surgery can get advice on how to proceed, and that the participants in this group have been openly denigrating outsiders who have raised valid concerns about the lack of research to support this surgery as a treatment for ME. I don't see how the existence of this closed group can possibly be consistent with Jen's claim (in the Twitter thread referenced a few posts back) that patients are "...doing their homework, getting multiple opinions, being cautious and deliberative, and finding empowerment...". It seems to me that the participants in this Facebook group are probably being fed a completely misleading view of the scientific case for this surgery and actively discouraged from paying any attention to those voices that understandably urge caution.

I still have a lot of respect for Jen and I can certainly understand why, given the dramatic improvements in her health, she would feel the need to 'spread the Gospel' of CCI surgery and ensure that other ME sufferers had ruled it out as a possibility. But I increasingly feel that this isn't the right way to proceed. What we need right now is some decent rigorous research to find out what connection - if any - there is between CCI and ME. More anecdotal accounts of improvement after surgery is no substitute for this. ME sufferers should not be encouraged to undertake risky and expensive spinal surgery when there is currently no way of knowing if it will improve their health in any way.

 

Jen Brea:"The conversation has gotten so ridiculous that some people showed me a thread where other people with ME wondered whether those of us with CCI have a form, of “mass hysteria.”

Nobody said that? I remember someone writing that people who think ME is psychological might twist the situation that way. I'm really disappointed that Jen is using her "power" to split the patient community, just because many of us don`t like that desperate patients are paying out of pocket for surgeries with a serious side effect profile and no studies on ME-patients to warrant them in the first place.

 

Jen Brea: "I can’t help but wonder if these same folks would have been some of the worst skeptics and gaslighters of PWME, if they did not happen to have it themselves."

What a horrible thing to say

 

At the beginning when JB recovered from surgery, I was optimistic that it would open the discussion and research concerning autonomic issues and M.E. But now it's taken on a whole new egoistic approach from her end.

 

I have no words for how appalling this is. It sickens me.

And still MEaction do nothing at all.

 

I am sure I will get my head bitten of for this, but lets try anyway:
My daughter had HPV vaccinations and became unwell soon afterwards. She subsequently had to leave University as she was sleeping 18+ hours per day.

In due course, as nothing else was found, she was given an ME/CFS diagnosis. Fibromyalgia kicked in, and during treatment for that, someone suggested EDS may be an issue. A diagnosis of hEDS was forthcoming, and we searched for help in all corners of the internet.

We came across CCI and its possibilities, resulting in us seeking the necessary scans and a trip to Spain. Dr Gilete examined her, and found AAI/CCI and Jugular Vein compression, for which he suggested C0-C2 fusion would likely be beneficial. Since then, we have discovered Dr Nick Higgins in Cambridge who is interested in IIH as a similarity (symptom wise) to ME/CFS, and he is suggesting Venograms to monitor blood flow to pursue or rule it out.

Neither of these people are saying 'All ME/CFS patients will benefit from this treatment'. I know Dr Gilete has turned down some as not requiring surgery, or would not be significantly beneficial to them. These are all people in a small subset of those diagnosed with ME/CFS, and generally have an hEDS diagnosis resulting in poor ligaments and collagen structure, leading to general skeletal instability characterised by frequent subluxations etc.

Remember that ME/CFS is not defined as such, but diagnosed after ruling out other likely causes, therefore, it follows that people left with that diagnosis may not have the same root cause. My daughters GP has remarked in the past that 'she is not like his other ME patients', but he still gave her that diagnosis.

On that basis, will we seek surgery? Possibly, after evaluating all other immediate avenues. What will we do next? We will try to see Nick Higgins and pursue less invasive treatments first.

If we can't get anywhere, we will look further into the fusion surgery. This is a surgery carried out relatively frequently in the UK and many other countries, with little risk and minimal further issues. The difficulty is doing it on hEDS patients with ligamentous issues. What tends to happen is that instability can develop further down the spine, and further bracing may be required in the future.

Is it worth it? There are documented cases of people walking for the first time in several years after surgery. Did someone die recently after this surgery? Yes, in Spain, a patient died, but they had, I think, the Vascular type, and willingly went into surgery knowing there was less than 50% chance of success in her case, simply so she had a chance at life. Unfortunately she lost, but it was a chance she took.

Why are other Neurosurgeons not looking to do this? Currently, the surgeons that are doing it, are looking at figures generated from different imaging to standard, and looking at impingement on the spinal cord sheath rather than directly on the cord (as I understand it), so the average Neurosurgeon (can you say average about a Neurosurgeon?) would dismiss the patient as being within normal limits.

So why do they not publish results? Well, before you can publish, you must have enough subject matter to formulate a clinical trial. Dr Gilete is expecting to publish late 2020, Henderson has already published, but based on Stenosis. However, Henderson is working on a trial with Malik in the UK, results to be published afterward.

So, as far as I can see, a small subset of Neurosurgeons have identified a small subset of ME/CFS patients who have specific issues that may be alleviated by fusion. The majority of ME/CFS patients will not be affected by any of this, but surely the fact some small part of the ME/CFS pool that can be removed from the pool, means that help and treatment for the remainder will be easier.

By which, I mean, if the current ME/CFS pool is 'polluted' by people that have structural issues rather than the classic ME/CFS issues, any potential research work done on a sample of the pool will have a percentage that will not benefit from something that could benefit the 'classic' issue, and the results will be inadvertantly skewed.

So why am I in this group if I think my daughters issues are structural? Well there is still commonality of symptoms, so ideas in here to alleviate discomfort etc is beneficial to all symptom sufferers. For instance, there is an article in here from a young lady discussing the benefits of her mobility scooter - that would have been helpful to see previously. There are articles relating to nutritional aspects that help fight some symptoms - all great, helpful information that may benefit anyone with those symptoms, regardless of their root cause. However you choose to respond to this, I wish everyone who is fighting a debilitating, under-studied illness the very best of luck, regardless of its underlying cause!

 

You have posted in order to discuss the issues rationally and openly, without any emotive rhetoric. That is what S4ME is here for. No biting off of heads .

 

Apologies, that was the wrong choice of words. We were told he would publish, rather than any specific info, so it is probably case studies rather than a clinical trial. The point was that information will be released regarding the success or otherwise of the work.

 

What on earth must you think of us?

Welcome to the forum and thank-you for your account .

 

The idea of true ME seems to be more an ideal than a reality. As in the case that you're describing, patients can also often be diagnosed with other health problems. It's not clear if these are manifestations of the same problem or if some of them are just overdiagnosed (EDS maybe?) or if it's a case of one person seeing fibromyalgia where another person sees ME/CFS. Unfortunately there is little clarity and likely won't be until we get good diagnostic tests.

 

To be honest, I presumed most on here wouldn't have a problem with the post, but some of the responses from people a few pages ago were pretty scathing about the whole concept ....

 

Hoping for better days for your daughter, @Irishwasa .

 

Sorry to be annoying but can you evidence this statement please?