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

Well, I agree with that. Everyone has an important responsibility for what he writes publicly and should consider the impact on others. But what you seem to imply is something much stronger: that a person has the full responsibility for everything that he says or writes publicly, as if it were direct medical advice. As I understand it that would make places like MEpedia, Wikipedia and S4ME practically impossible.

I always do my best to consider what I write on S4ME and to post things in a responsible matter. But due to my illness, I do not have a medical education and I suffer from cognitive symptoms that make me prone to errors and mistakes. If it is correct for people to interpret my blog posts here as medical advice and I bear the full responsibility for that, then the only responsible thing for me to do would be to withdraw and to stop discussing medical issues on fora such as S4ME.

I do not agree with this. Readers should comprehend that this forum is about ME/CFS patients, carers and others trying to understand the science and issues surrounding ME/CFS and helping each other with this. S4ME posts can contain errors because it is about trying to understand things and helping each other with that. Posts are not formal statements or medical advice and anyone interpreting it as such bears some responsibility in misinterpreting this. That is how I see it. Something similar is true for MEpedia - it's about the ME/CFS community trying to gather reliable and accessible information about issues that concerns them.

Is this really an issue or did we simply misinterpret each other's words?

Are there people who think MEpedia should stop because information about medical conditions and treatments should only be collected by persons who had medical training and are qualified to do so?

 

Just chipping in on this bit. For me a crucial thing, is that when unqualified people write something where there is any chance it could be misconstrued as being written by someone qualified, then they should make very clear, on a per-article basis, what the limits of their qualifications are, and what they are not qualified in. I strongly feel it is wrong to fall back on a single obscure disclaimer that might be easily overlooked. We have to remember it is incumbent on us to protect people who may be very different to those of us in S4ME and advocacy generally, and may simply not have the aptitudes needed to analyse and assess the validity of what they read, nor should they have to.

We have to consider use-cases, which includes the case of someone who may not be especially mentally astute even when fit, but is now ill, is desperate, and grabbing at whatever straws they can get hold of. We have to try as best as is reasonable, to protect those we might see as gullible, and be sure to not push important disclaimers into corners in the hope they may not spot them.

 

I think it is an issue but I think it needs to be kept in proportion and seen in context.

To be honest, I have never seen a post from you, Michiel, that anyone is likely to misinterpret in a way that might lead to an unwise action. Nobody has gone off and had operations because of your blogs and they very likely never will. Taking responsibility for what one says involves a judgment about how it is likely to come across and what people are likely to do. If one is not sure one has to be careful, but I don't think that means all wiki sites have to close down.

In fact these high risk situations are quite anomalous. We do not come across so many of them. There are all sorts of snake oil sites but they are easily seen for what they are, even if I still do not endorse snake oil selling. What is more problematic is when proposals are put out in the context of what purports to be a responsible pro bono information site.

I don't think there are any definable rules here, any more than for human behaviour in genera;. It is too complex. Maybe the only rules are caution and considering the effect on the vulnerable.

 

I agree with this. Perhaps MEpedia should not claim to be an encyclopedia but just a ME/CFS resource instead. And perhaps the disclaimer should be more noticeable at the top and include a statement that the info is written by unqualified peers or something.

But notice that Wikipedia doesn't do this. I think it is clear that MEpedia is crowd-sourced information source just like Wikipedia and that anyone can edit pages.

As I understand it MEpedia was intended to replace some of the questionable information sites and blogs that were frequently used before that. MEpedia makes it easier for others to correct things, to add references etc. Anyone can chime in. So I do not quite get the skepticism of science-minded members of the ME/CFS community towards this concept. You can't expect that ME/CFS patients will go and read the long threads (sometimes tens of pages and pages) of discussion on S4ME to look for the bit of info they are searching for. I see MEpedia as a way to make the ME/CFS community more science-literate, collect and store the information we have and make it more accessible to outsiders.

 

I agree with this. I’m just wading in to this thread as someone who was really affected by Jen Brea’s recent articles on CCI (written in the medium), which were then widely disseminated throughout the ME action sites. I think both she and Jeff, and I’m sorry to call them out by name but I really think it needs to be said, had a responsibility towards other M.E. patients, especially when acting as advocates. People *do* take it as medical advice. When we are desperate, we do turn to “alternative” doctors but also to what other patients have done, in the absence of any other help. Me personally, I spent thousands of pounds and made myself more ill at Breakspear (a private hospital in the UK which purports to treat Lyme, CFS, using all sorts of random and quite frankly dangerous methods), just on the basis of someone else who had gone there and got a lot better and written a blog post about it. I know others have done the same on the basis of that blog too. It’s the same for this. When people put this out in the world; they should think what it’s implications are. In particular one thing that Jen Brea said in her Medium article was this.

“Whatever the cause or central mechanism of your ME, there is a reasonable chance that when it is discovered, a treatment may already exist, waiting to be applied to a population it never imagined could need it. That discovery could come from a clinician or researcher. It could also come from an unusually dogged and creative patient, like Jeff, like you.”

The way that’s written.. :/ it really does feed into that as well and it really worries me.

I spoke to a cardiologist who treats PoTS and he told me that many of his patients had recently crowdfunded for and are planning on undeRtaking CCI surgery in America and Spain (one was even going on the plane in a few days time). I spoke to a girl who consulted the surgeon in Spain and who has been told she needs to be fused from C0-C5 and will have no neck movement *at all* and that this is the cause of her M.E. I’ve spoken to others in the UK with a ME diagnosis who are now crowdfunding to get surgery, some even multiple members of the same family. It’s not a small thing. It’s spinal and neck surgery which lasts for many hours. We do *not* have proof that this is M.E, yet so many people are going down this route. In the same way as the lightning process, in the same way as Breakspear, in the same way as Lyme treatment, in the same way as so many other things.

I have severe M.E and when I heard about Jen Brea’s story; I was so overwhelmed and so desperate. I trawled the internet, read every story despite worsening health - I live on benefits yet we hired a private ambulance and paid for a private MRI, out of my credit card, travelling to which set me back many months and from which I still haven’t recovered, just to check out whether I had CCI - and sent it to the surgeon in America, who then told me I had to find a physio who would do traction to be sure whether I had or or not. I didn’t believe this is safe. At that point I was near breakdown, and just couldn’t carry on with any of it anymore. Sorry for rambling but the thing is, I’m not alone. So many of us are so desperate, yes I should “know better”, but I am severely ill person and yet there’s all these people online who write extensively about how they’ve recovered and what the Co-morbidities are (my search for MCAS and PoTS is another story which is equally terrible and set my health back a lot). There’s so much that isn’t known. But the way a lot of advocates write, it’s as if they are known.

I too think that the CCI page currently has no place on the ME-pedia site until there is research into it and more is actually known about it.

 

Thanks for sharing your perspective @lunarainbows

I would like to add something that I've already said in private to some and perhaps I should have stated in this thread earlier.

Although I worked on the MEpedia page on CCI, I didn't create it. The page already existed for many months and contained, in my view, misleading information. I've tried to correct these mistakes and provide more accurate information to the best of my abilities as MEpedia is frequently consulted by patients and Jennifer referenced to the page on her highly read blog posts.

I've tried to write a blog post on S4ME about the risks and concerns about CCI diagnosis and treatment in ME/CFS. But S4ME is but a small fraction of the ME-community. It mostly reaches patients who are already skeptical. The first information you see on a google search comes from sources such as the pain relief foundation, EDS websites and Giletes website that contain similar (misleading in my view) information. On Phoenix Rising only sources (mostly video's) of the handful of EDS surgeons is spread. I was concerned about this as many patients will be searching for more information about CCI after Jeff's and Jennifers recovery stories. So by updating the MEpedia page I hoped there would be a more accurate and reliable source about CCI that counters some of the optimistic claims being made about CCI and fusion surgery.

I do not, however, have the leverage to get the MEpedia page as I would want it. If I were to delete things, others would simply add it later on. Some of the more problematic aspects in my view are: mentioning vague symptoms such as fatigue, sleep disturbance and cognitive impairment, the video of Bolognese who is rather controversial and mentioning anecdotal cases of ME/CFS patients being diagnosed with CCI etc. The page still relies on publications from EDS surgeons as they have published by far the most on this in recent years. I do however think the page is more accurate and balanced than other sources circulating in the ME/CFS community. For some patients, this might be the first source they read that indicates there is currently no scientific connection between ME and CCI, that fusion surgery has severe and common complications or that the clinical picture of CCI is quite different from ME/CFS etc.

Given (1) the current interest in this topic now that many ME/CFS patients will look for information to see if the recovery stories might apply to them, (2) the lack of reputable and easily accessible sources on CCI (I could hardly find any except for short mentions in textbooks and actual papers) (3) the rather unbalanced information circulating on the internet and ME/CFS groups, I think it's better to have this MEpedia page rather than not. I also think that asking for it to be deleted is very unlikely to be successful.

Some people might argue that it is inappropriate that the MEpedia mentions anecdotal cases of ME/CFS patients being diagnosed and treated for CCI. I agree, but I consider the chance that patients randomly start looking for Craniocervical Instability without any background rather low. Perhaps someone might search through random MEpedia pages and end up there, but I suspect the vast majority will visit the page because they have already heard about the recovery stories. In the majority that will be the reason for visiting the page, and they will read:

All the info before the bolded part they will most likely already have heard of.

I hope this clarifies things a bit.

 

@Michiel Tack thank you for your reply. I just want to address one point, that is: you wanted to write a resource that mentions that the symptoms of M.E are very different to CCI (listing symptoms of CCI). I think you should be aware when you say this, that it may actually backfire and have the opposite consequences of what you wanted! quite honestly I think I came across a similar post on Phoenix rising (maybe written by you?) when I was first researching, and that did lead me into a tailspin of panic and made me Think I have CCI. Essentially, I *do* have some of the “symptoms of CCI”. Things like neurogenic bladder, neck pain, sometimes vertigo and so on. So then I got anxious I had CCI, and not M.E! But these too are actually very non-specific also and can be explained by a multitude of things. And here’s the thing, lots of M.E patients do have those symptoms too.

I know of one M.E patient who had severe vertigo due to vestibular migraines and others who have vertigo too. One person who’s decided to go to CCI surgery is doing so with one of the reasons being they have vertigo and I think they seem to think that’s a deciding factor. I know another who had severe neck pain for 12 years while bedbound (they since recovered from M.E, almost like a switch!), and I know at least another two with bladder symptoms and infact autonomic symptoms relating to the bladder are very common too, not just in M.E. I have neck pain, which I’ve now found out is due to a shortened muscle due to lying in bed. Maybe these types of symptoms are not mentioned under specific M.E/CFS criteria online (certainly not in the UK guidelines!) , *but* if you were to go on any M.E forum and particular a severe M.E forum; these symptoms are often mentioned. Severe M.E in particular has a huge range of symptoms that often isn’t mentioned in other places relating to M.E. Would you please consider revising that chapter/sentence about this, because it wasn’t helpful for me and I worry the impact it could also have for others.

Edit: maybe something like “the symptoms relating to CCI can often be non-specific, and can have many others causes too”.?

I am grateful though that you are doing what you can to try to edit it from before to make it more balanced.

Edit 2:

If these are problematic (I agree), why are you not able to delete them and speak to the others who may be involved in the page, and tell them not to re-add the things back in? At the very least until the research is there. Or is this due to how ME-pedia is run? (I’m new to this).

 

I think you make a good point @lunarainbows that listing symptoms can be misleading because the same term such as vertigo or neck pain can mean different things in different illnesses. Therefore I agree that making a long list of all the symptoms that have been reported in CCI patients is not really helpful because this is usually not how the diagnosis is made (it's normally only made in certain types of patients who are at risk) and ME patients can misinterpret these wrongly or see something in it that isn't there.

This, however, wasn't the case. You can view the blog post I wrote here (I also posted it on Phoenix Rising, so it is possible you saw it there): https://www.s4me.info/threads/concerns-about-craniocervical-instability-surgery-in-me-cfs.9638/.

It doesn't really list the many symptoms CCI patients can have, but mentions: "The main symptoms of CCI consist of severe neck pain, [2] and neurological abnormalities [3] that are quite different from the characteristic ME/CFS symptoms." followed by some case examples in the literature who had notable neurological abnormalities. I did want to write how CCI usually looks like because this wasn't mentioned in Jennifers' or Jeffs' writings. Since their blogs wrote that they had typical ME presentations that turn out to be CCI, I assumed readers would get the impression that the clinical presentation of CCI very much looks like ME.

What sentence do you mean exactly?

I should say that I'm rather skeptical that my text gave you the impression that you might not have ME but CCI instead. I suspect you got the idea from reading the recovery stories and then you probably searched for more info and with each piece of info your mind went on to think how it could relate to you having CCI. So I suspect that if you had taken a medical textbook or scientific review to look for information about CCI, the same thing might have happened.

 

Hi @Michiel Tack sorry I didn’t word it right, regarding the ME-pedia page, the bit I meant was when you wrote “For some patients, this might be the first source they read that indicates there is currently no scientific connection between ME and CCI, that fusion surgery has severe and common complications or that the clinical picture of CCI is quite different from ME/CFS etc.”

I take that to the mean that in the ME-pedia page, you have somewhere written that the symptoms (clinical picture) of M.E are different to CCI. (I also do remember seeing a list of symptoms of CCI on that page; and getting anxious because quite a few of those symptoms also do occur in M.E, as I’ve mentioned in my post above). I have not yet read the revised CCI page on ME-pedia, since I last read it a few months ago - the reason for this is because when I last read it a few months ago (before going through all the panic and anxiety about this all), it caused me a lot of mental distress.

Re your post: Yes, that is the post I meant. Again, I’m sorry I do not want to read through it all again (just skimming it is making me quite panicky!), but I will say that I do remember reading in the case studies and in places in your post, about vertigo, neurological symptoms, dizziness, neck pain, bladder symptoms, tachycardia, numbness, severe headaches, and quite a few other symptoms which occurred in CCI patients / symptoms associated with CCI. As I say, some of these do occur in M.E patients for reasons wholly unrelated to CCI. Yes it is not your text only that gave me the impression - I had already read about the condition by that point, and I was linking to it - it’s just that it contributed and it may do so for others.(yes I’m sure if I read a medical textbook I’d feel the same. I wouldn’t read one though, as it’s far too much stress!).

Edited: I’m not sure if I’m explaining myself properly. I agree that the symptoms of CCI in the literature may well look different in general to the typical clinical profile of M.E but not always; and certainly not always in severe M.E in my opinion - with quite a few of the CCI symptoms and neurological symptoms overlapping into M.E. That’s what I was trying to get across. (As an example, I’ve also been told by a physio who has been to see me (when I was very stressed about CCI), that neck pain, even severe, can be extremely common in severe M.E patients and those in bed due to shortened muscles and ligaments.)

And the point is that even if people have M.E, and some of these neurological symptoms together with neck pain, it doesn’t have to mean they have CCI. I struggled to make that distinction before which is why I was so anxious, and I just wanted to point that out. There are so many explanations, least of which: M.E. I’m getting sleepy now so I’ll go before I start not making sense

 

It's rather confusing with the text I wrote and the MEpedia page being mixed up.

I agree that on the MEpedia page there is a long and unhelpful list with just about every symptom that has been reported in papers on patients with CCI. But I didn't do that. The list was initially longer and included autonomic symptoms, IBS etc. I insisted on deleting those because they were probably due to comorbid conditions CCI patients had such as EDS. Initially, the symptoms formed one big list with no hierarchy. I insisted on highlighting severe neck pain and neurological abnormalities (the wording used on the page now is the middle ground) because it is rather unlikely that a CCI patient has a collection symptoms such as fatigue, sleep disturbance, apnea etc. with these more notable neurological abnormalities.

Regarding the text I wrote myself, I'm still skeptical that it gives patients the impression that their ME might actually be CCI. I think it gives an accurate description of CCI and it argues that CCI is only described in certain illnesses such as congenital disorders and that research into CCI in EDS is still in its infant stages. Perhaps one thing I could have written differently is the first point of the disclaimer I proposed. It reads: "Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS." I meant that clinicians wouldn't normally confuse the two as they are seen as quite different clinically. As I said, both Jennifer and Jeff gave little information on CCI in their blog posts and since they said having typical ME that, according to them turned out to be CCI, the impression readers got was that ME and CCI were alike. That was the reason I wrote about this.

 

@Michiel Tack i just edited my above post as I wasn’t sure I was explaining myself properly. Yes I think the confusion comes from the fact that you wrote the symptoms of both are clearly different. Thats the sentence I talked about and that’s where my worries came in - as I took it to mean, well I must have one or the other. And as I did have neck pain, followed by quite a few of the neurological abnormalities.. well, the anxiety started. Maybe that’s just my brain jumping to things as I am very literal in my interpretations. And it took a while for me to realise they could well be explained by M.E too. I’ve just edited my last post before this one, to explain more of what I meant about the overlap between symptoms. I do understand why you wrote about it though.

 

Ok, I see your point.

Although rereading my text, I don't think it gives the impression that there are symptoms of CCI and symptoms of ME/CFS and that these do not overlap. What I wrote was: "The main symptoms of CCI consist of severe neck pain, [2] and neurological abnormalities [3] that are quite different from the characteristic ME/CFS symptoms." I also state that the cervical medullary syndrome is a "symptom complex that is quite different from ME/CFS." which I also think is fair to state.

They only thing that might be somewhat ambiguous is this part in the disclaimer: "Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS." Patients with CCI usually won't have PEM, extreme exhaustion and fatiguability, flu-like symptoms etc. What I meant by it is similar to what others have noted: few patients with CCI present with symptoms of ME/CFS or based on descriptions in the literature there would be little diagnostic confusion between ME/CFS and CCI etc.
https://twitter.com/user/status/1131517994364891137


But if it is causing confusion, I'm willing to change it. Would something like: "the clinical picture of CCI is quite different from ME/CFS" be better and less ambiguous?

 

I assume that when someone writes that main symptoms of CCI are neck pain and neurological abnormalities, people would still understand that you can have neck pain or neurological abnormalities for other reasons.

 

Jeff also mentions that "PEM itself" can be caused by CCI/AAI.

JB woke up from surgery and knew immediately (without even walking around) that she was cured of PEM.

 

@lunarainbows when I read your story of your experiences I just felt so sad. I can relate to the desperation, I guess many of us can, & I just wanted to send you (if you are open to hugs) a big gentle one
Thank you for sharing your story here.

@Michiel Tack thank you for all the effort you are putting into trying to minimise the negatives on MEpedia.

I just find that extraordinary. A bit like someone saying they knew they were cured of their peanut allergy before they ate any peanuts.
But what do I know?

 

Where did she say this??

 

She wrote this on her twiitter soon after her surgery.

She replied to me here

 

It seems to be human nature to react to uncertainty about something by building a strong belief about the nature of this thing. The more uncertain something is, the stronger the belief to know the truth.

The belief seems to exist mainly to neutralize the unpleasant sensation of uncertainty (and in the case of illness, hopelessness).

When the truth is self evident then there is no need for any such beliefs.

 

Yes indeed. I did think along those lines, which is what I was trying to explain in my posts

Yes please. “The clinical picture of CCI is quite different from ME/CFS” would be better.

However I think it is also equally important to point out in this context that neck pain and many of the neurological abnormalities can and do occur in M.E, as well as for many other reasons. Ie the overlap. It’s not actually obvious to many. This is what I’ve been trying to get across. As Trish says, desperate people in this context can read ”neck pain” and neurological abnormalities and jump on it. I certainly did.

I know of others, from reading twitter threads, that have jumped on “neck pain” (not from your posts, but in general; the idea of neck pain being indicative of CCI seems to be floating around.

I spoke to my mum about this, who has a medical background, and she had to painstakingly talk me through all the many different conditions that can cause neck pain, which are nothing to do with CCI, including many conditions that M.E patients could very possibly have, not least just from M.E itself. Until I had that conversation with my mum, I was constantly having panic).

Take for example this - “The main symptoms of CCI consist of severe neck pain, [2] and neurological abnormalities [3] that are quite different from the characteristic ME/CFS symptoms”. You are correct in that those are the symptoms of CCI, so I am not negating anything that you’ve said - you are right to say what you say about CCI, if all you were talking about was CCI.

But you are discussing it in the context of M.E as well. And actually neck pain and neurological abnormalities do occur in M.E. of course M.E patients obviously do have a lot of other, more prominent symptoms including the characteristic M.E symptoms like flu feeling, PEM, painful glands, etc, on top of the neck pain and neurological issues.

But for someone with severe neck pain (which can be very common with severe M.E in particular, due to having to be in bed for extended periods, as I’ve said) and has neurological abnormalities, can you see how it can cause worry?