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

To everyone reading, I want to say I’m very sorry for my paragraphs in my earlier posts, it’s been pointed out quite rightly by an admin that my paragraph lengths were too long, and many with M.E will struggle. I certainly understand that and should have known better.

Over the past two years I’ve had many days and weeks/months where I couldn’t even look at a phone screen, let alone read a sentence online.. even earlier this year it was like that. it’s only recently I’ve been able to read a bit more and go online and read and write longer messages, and now I’m so excited about it, I just wrote long paragraphs without thinking of the consequences for others.

I’m very sorry and I hope I did not cause distress to others, and I will be mindful in the future. Please do let me know if my paragraphs are still too long.

 

Thank you very much, I am very open to hugs.

 

I would like to change it but it seems I cannot edit old posts both here on S4ME and on Phoenix Rising. Perhaps one of the moderators know a way how to fix this?

Yes. I think you raise a good point about the danger of focusing on symptoms in trying to figure out some rare diagnosis because there will probably always be a fraction of patients with the ME/CFS labels who do experience these symptoms. This is something to keep in mind, perhaps not only in relation to CCI but perhaps other possible diagnoses as well.

On the other hand, I do not see how I could have done it differently. Any information about CCI might have been interpreted this way. For example, say I hadn't written about it at all. Since Jens and Jeffs' blogs wrote that they had typical ME presentations that turn out to be CCI, readers would get the impression that the clinical presentation of CCI looks like ME.

And I suppose that people really looking into this, will search for symptoms of CCI anyway, and they would have come upon EDS websites that in my view are less accurate. As I've already mentioned if those ME/CFS patients interested in knowing whether CCI applies to them, were to find a very reliable textbook or papers about CCI they would also have read typical presentations of CCI involving neck pain and those neurological abnormalities.

So I don't think that the fact I wrote the info in relation to ME/CFS makes a lot of difference here. Readers were looking for that information anyway and might have made that connection with just about any reliable source on CCI.

Suppose I didn't write about the symptoms at all, but just mentioned that a diagnosis of CCI is based on imaging and scans. Then, given the background, readers would probably still have the impression that CCI looks like ME more often than it does and they would want to have those imaging and scans, no matter how expensive.

 

@Michiel Tack it is very definitely a good thing you wrote about it! It was a much needed post and I’m also glad you edited the ME-pedia page (from what I read many months ago, it was not good at all before).

I’m not saying to delete anything you already wrote. I’m just saying, an additional “However, many of these symptoms, including neck pain and neurological abnormalities, can occur in M.E as well as in many other conditions”.

I just think if I had read that somewhere, anywhere at all during my research, I would have found it very very helpful. I think when you look at things through a logical lens, things are read in a certain way. When you look at things through a desperate, highly anxiety-fuelled lens, people read things differently.

Infact, could this sentence be added to ME-pedia? Can I add this? I don’t mind if it’s taken down later. I’ll just re-add it! I just would like it to be said somewhere.

Edit: sorry I went on that ME-pedia page and got a panic attack. Clearly am still traumatised from all the CCI things I went through over the past few months so I can’t edit it now.

 

Jennifer mentions this at the bottom of each of her Medium blog posts. She writes: "the same exact symptoms can have multiple, different causes".

To be honest I don't quite get why this is such an important point.

Do people really think that something like neck pain is a symptom that only occurs in CCI? That ME patients don't get neck pain and if they do that would suggest CCI?
Headaches are also a common symptom reported in patients with CCI, but I suppose it's obvious that you can have headaches for other reasons as well. I would assume that people know that there are other neurological illnesses that can cause numbness, frequent falls or motor weakness. I find it strange that this should be mentioned.
Healthy people can complain of neck pain, fatigue, headache, dizziness etc. Obviously, that doesn't mean they have CCI.

Perhaps you wanted me to write something like: ME can cause neck pain and neurological abnormalities such as numbness, gait instability, vertigo etc., or that these symptoms frequently occur in patients with ME. The international consensus primer mentions some of these neurological abnormalities but they are rather controversial. So that would be a statement that could be misinterpreted as well. Some of the abnormalities mentioned in the CCI case examples I cite include partial paralysis or frequent falls due to poor proprioception. I don't know if I feel comfortable enough saying that this is normal in patients with ME, or could be explained by ME.

In making a statement about this (for example: "it's normal to have symptom X if yo have ME"), there might be a danger of attributing too many symptoms to ME, so that possible other (comorbid) health issues aren't properly considered or investigated. The same goes for something simple like headache or neck pain. If one says this is a ME symptom patient could just have easily misinterpreted this as 'explained by ME' and fail to consider other possible reasons for these symptoms (such as a wrong posture while resting/sleeping) that can be treated.

Anyway, I've added the bold part on the MEpedia page: "No particular symptom is mandatory for a diagnosis of CCI "and each symptom listed might have a cause other than CCI."

 

Unfortunately, yes. I do think some people will latch onto it. Infact I remember a Twitter post from someone, saying something like “trying to remember all the times I’ve had neck pain and thinking I could have CCI”, or something to that affect. And I remember a prominent member of our community replying to that post, saying “yes!”. I do know of one person who due to her neck pains specifically looked into CCI. I’ve seen on the other forum people talking about how they get neck pain and headaches and that’s why they’re looking into CCI.

And I’ve mentioned quite a few times in this thread how this specific issue has caused me distress. I think maybe you aren’t understanding as you are reading it differently. All I can say is when you are very desperate and extremely anxious, you do interpret things differently and yes people can jump to conclusions especially in something so high-profile as this.

No I do not want you to say that. I only wanted you (or anyone on the ME-pedia page!) to say precisely what I had already written - the sentence being that many symptoms can also be part of M.E as well as many other conditions. It seems obvious but I really do think it’s not obvious to everyone because of how high profile this has become.

With the specific symptoms as you say, they could be attributed to M.E but also to anything else - and if people thought everything was due to M.E; they wouldn’t look into other things that could be tested. A case being someone with M.E who also has vestibular migraines causing vertigo. Or neck pain being due to shortened muscles which can be sorted with physiotherapy.

Yes, I agree with this. I didn’t want you to say that anything is “normal” with M.E and that wasn’t my intention.

Thank you. I am happy with this

 

My interpretation is that these patients were making a connection to their own situation and CCI because of the spectacular recovery stories and that mentioning neck pain as a symptom that frequently occurs in CCI has little to do with them making that connection. I think it's more like a rationalization of them trying to make that connection. So, if it weren't for neck pain they would probably find something else (like a symptom Jeff and Jennifer reported) to make that connection.

Sorry if I misrepresented what you were saying here. But to me adding that sentence to my text would suggest that neurological abnormalities like partial paralysis or frequent falls due to poor proprioception etc. can occur in ME. Perhaps they do but I don't know if I'm comfortable emphasizing this as it could be misinterpreted as well.

 

I just feel like we are going round in circles about this from my interactions and my own individual experience, neck pain is one of the prominent symptoms people were focusing on. Maybe because it’s the one that lots of people with M.E have? In any case I am glad that in my case I am now ok, both my mum and a wonderful, supportive physio have been so helpful about my neck pain, possible causes, and have helped reduce my anxiety about it. And hopefully for others in my situation they will have others too who will do the same.

That is not what I intended at all, and I’m sorry if it came across in that way. I wasn’t thinking specifically about some of the specific neurological abnormalities like partial paralysis, and certainly didn’t mean all the symptoms. That’s why I said “many of the symptoms” not “all”. And even then, I didn’t mean they could be due to M.E only. Looking back at the sentence, i should have worded it “can occur in M.E or in other conditions” rather than “as well as”, as that’s what i was trying to get across.

I was trying to get across that the symptoms which are being attributed to CCI on forums/anecdotes/pages, don’t necessarily have to be due to CCI. Could be M.E, could be not M.E, could be migraines, could be muscular pain, could be another condition, could be something entirely treatable - but saying don’t jump to the conclusion of CCI like I did!!

In any case, I’m happy with what you’ve written on the me-Pedia page.

 

It seems a number of references have been added in an again misleading manner, in particular on 'Outcomes, risks & complications' from fusion surgery.

(Edited to add: on the 'Craniocervical instability" page.)