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

JenB said:
Well, if that is the case I am still left confused. Given that the “trifecta” of EDS/POTS/MCAS is pretty well-established in clinical EDS land and given that the “neurosurgical complications” are also pretty well-established, it is not uncommon to have multiple diagnoses, conditional on having a EDS or another connective tissue disorder. And that’s not even going into abdominal cavity, heart or hip stuff...people with EDS generally have multiple things wrong with them. It’s the nature of the beast and is actually a part of the diagnosis.

Re: exercise, that does seem to be a problem in some EDS groups, that they can be very pro-exercise. I worry about the EDS patients who experience PEM but don’t know it yet. When I have spoken to some EDS patients with dual diagnoses of ME & EDS they have said they tend to stay away from those EDS groups that can have a “no pain no gain”
mentality and gravitate toward ME groups where symptoms and experiences are similar/more relatable.

I imagine it’s not that different from POTS or fibro. Some people with these diagnoses do improve with exercise and PT is a bedrock of EDS care. Obviously exercise and PT can be difficult to impossible if you also have PEM. For those who do not experience PEM but may have some of the other symptoms of POTS or fibro, say, that overlap with ME symptoms, there can be a significant disconnect.

When should a person no longer qualify for an ME diagnosis even if they meet the diagnostic criteria? That is an interesting question and I don’t think we know the answer yet.
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Exactly, the "trifecta" relates to EDS, why does this have any relevance to ME? You have previously stated that EDS, CCI, Fibro, MCAS, ME have overlapping symptoms. Which ME symptoms are not covered by another diagnosis. I'm guessing the answer is PEM, which is very subjective and open to interpretation. Many chronic conditions have "fatigue" after exertion but this is not the same as the decline experienced by ME patients. However, I can see how these patients may believe they have PEM, and therefore ME.

Without getting into the benefits and shortfalls of the various criteria. Criteria shouldn't be used as a tick box exercise, diagnosis should include an appraisal of the pattern of symptoms, as well as the lack of certain symptoms.
 
JoanneS said:
Exactly, the "trifecta" relates to EDS, why does this have any relevance to ME? You have previously stated that EDS, CCI, Fibro, MCAS, ME have overlapping symptoms. Which ME symptoms are not covered by another diagnosis. I'm guessing the answer is PEM, which is very subjective and open to interpretation. Many chronic conditions have "fatigue" after exertion but this is not the same as the decline experienced by ME patients. However, I can see how these patients may believe they have PEM, and therefore ME.

Without getting into the benefits and shortfalls of the various criteria. Criteria shouldn't be used as a tick box exercise, diagnosis should include an appraisal of the pattern of symptoms, as well as the lack of certain symptoms.
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Because there are a lot of people who meet ME criteria and/or were diagnosed by an expert ME/CFS clinicians, who are a part of our community, and who have the trifecta.

You may say these are not “true ME” patients but it does explain why a lot of people are suddenly getting multiple diagnoses: they had a previously undiagnosed connective tissue disorder.

Most of these are hEDS patients but a few are cEDS or vEDS. Clearly, ME/CFS clinicians need to be more aware of EDS and be screening patients who have suggestive clinical signs or family histories. My understanding is Donna Felsenstein (Harvard/MGH) has started doing this for her ME/CFS patients. I hope others follow suit. It will help a lot of people.

And no, these are not all people who simply “believe” they have PEM and are confusing it with fatigue. Many of them have PEM. Many were diagnosed by expert clinicians, had extensive testing, etc. Some of these folks have been deeply involved in our community for years.

Spend time in EDS, POTS and MCAS groups and you will find many, many patients describing PEM even if they don’t call it that. Not all but a lot.
 
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Rain said:
Jen, statements like these makes it seem like you take for granted that everyone has the same kind of follow up-possibilities as you had. Would you advice against going trough with the operation, even if medically indicated, unless you live nearby and/or have the means to stay close to the specialist for the following year?

It seems like crowdfunding people do not count in complications in their goal amount - often there is need of a second crowdfunding if something does not go as planned...

I know you have good insurance, but do you know the total amount of the costs during your first year?
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I really cannot offer blanket or individual advice regarding whether someone should have surgery. Jenny believed her life was at risk and implied her doctors did, too. People’s circumstances vary so widely. Every situation is different and the balancing of risk/reward, an individual, contextual choice. This question of budgeting for complications or additional surgeries has been heavily discussed on fora where people are considering surgery, like PR and FB, and is definitely on people’s minds. What I do hope is that neurosurgeons outside the US/operating outside of public health systems are actively discussing the possibility of the need for additional surgery with their patients. It is very common to need more than one surgery.

My medical costs (not including travel) came out to about $7,000 due to one aspect of a procedure that was oddly not covered. They only covered my plastic surgeon’s wound closure up to a certain amount, something I am still fighting.

If I had paid out of pocket, my expenses (not including thyroid surgery) would have been roughly $400,000-$500,000 for four procedures and cumulatively, six weeks of hospital stay. This is in part because expenses are grossly inflated in the US. My insurance only paid about 50% percent of this. I do not owe the balance.

In the US, there are surgeons who do take Medicare, which is state-sponsored health insurance for the elderly or disabled. However, they do not accept Medicaid, which is health insurance for the poor. Crowdfunding in the US is essentially out of the question as list prices are 25-50% higher than in Europe. Many US surgeons won’t even take cash pay patients.

I hope this answers your question.
 
Jonathan Edwards said:
Jen, please stop putting out statements that you are not qualified to make. It is accepted by the vast majority of medical practitioners who have dealings in this area that there is no relation between any of these diagnoses. Neurologist-surgical complications of anything other than EDS are not established. I have spent the last few months canvassing opinion within the medical profession and I have found nobody who is not making money out putting out these ideas who thinks they have any basis. It is a scam and very widely recognised as such within the profession.
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Most members of the medical profession who have no dealing with ME/CFS patients also don’t think ME/CFS exists. I am not sure this should be the standard by which we judge whether a concept or observation is valid, especially when the profession has proved by and large so grossly incapable of helping these patients.

The trifecta is the common understanding of the EDS Society and the people who participate in their conferences and scientific symposia. It’s a hypothesis and is also a common clinical observation. Dysautonomia International, as far as I am aware, is on the same page, observing that hypermobility and CTDs are very common among the heterogenous population of patients they represent.

I allow them their understanding as much as I hope others will allow us our understanding of PEM and our definition of ME/CFS, which frankly stand on similar scientific ground.

In the end, research will bear out the truth. Collaboration will help sort it out faster.

In the meantime people with EDS are getting their POTS and MCAS diagnosed and managed, significantly improving quality of life. People with ME/CFS, too.
 
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Rain said:
Jen, statements like these makes it seem like you take for granted that everyone has the same kind of follow up-possibilities as you had.
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And I do not take this for granted, not at all. This is a problem we (on other fora) have been observing and discussing for months.

I am very aware of the hurdles. I just know the family is fighting and that Jenny's story is still being written.
 
Sorry - rambling post that's largely just me writing to work out what I think.

There are lots of things surrounding ME/CFS that I think make the promotion of experimental interventions with personal stories of recovery particularly troubling:

-the way the media can jump on recovery stories with 'do we finally have an answer to understanding CFS!' hype.
-the way some drs can jump on recovery stories with 'we just need to provide these patients with the right narrative to have them recover' hype.
-the way patients can feel pressured to try all manner of different treatments that risk making their lives worse by other people, or even to demonstrate that they want to get better.
-the way patients trying different treatments with a poor evidence base can be presented as evidence of how unreasonable CFS patients are (especially if there's some risk with those treatments), and how they need to be carefully psychosocially managed by their betters.
-the way that this could be used to try to undermine patients concerns about the way dodgy treatments are being sold to patients on the basis of weak evidence of efficacy.
-etc, etc, etc.

These are all reasons why I'm even more concerned by the promotion of recovery anecdotes guiding future actions by patients with CFS than I am with other conditions, and I'm pretty concerned by the harm this can do to desperate patients with cancer, MS and anything else that has people frantically looking for any way to recover. To me, the whole thing of crowd-funding for treatments lacking solid evidence for efficacy seems like a really strange direction for charity.

I wonder if concerns like these are leading people to be more critical of Jen personally than they would be of a patient with another condition who was behaving similarly? If so, is that fair? I don't know, and this is probably further complicated by the way that Jen's a semi-public figure following Unrest and her ties to ME Action.

I can see things both ways, but reading some of the posts here I wonder if some people are starting with different assumptions about whether these sorts of issues are important, and should affect patients? That could be leading to some extra frustration?

The more I've read about this surgery and how patients are being selected for it the more worried by it I've become. To me it seems likely that this is going to end up harming patients through unnecessary surgical procedures, and also perhaps through worsening social and political problems if it can be presented as something CFS patients as a group are pushing for (and we know some influential figures will be happy to create a misleading impression if it helps undermine patients' attempts to raise standards for their care). At the same time, I don't know how much responsibility it's fair to apportion to patients who are just talking about a procedure that they believed helped them (this is a common quandary with people claiming that they recovered following x). Though if there are private groups where people are being encouraged to pursue questionable testing for suitability for this surgery, that seems like a really bad idea.
 
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JenB said:
Most members of the medical profession who have no dealing with ME/CFS patients also don’t think ME/CFS exists.
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I was not talking about members of the profession with no dealings with ME/CFS - we know those are ignorant. I have spent the last few months getting opinions from professionals in various specialties who are deeply involved in ME/CFS care - rheumatologists, paediatricians, neurologists, other physicians (and also anaesthetists who work with neurosurgeons who do neck surgery). I have not asked psychiatrists.

There has been a complete consensus so far:

1. ME/CFS is a well established syndrome with a prevalence of about 0.2-0.4%, higher in adolescence where the illness may be relatively short lived.
2. hEDS is a diagnostic term that is not fit for purpose and should be scrapped.
3. Recent population studies confirm the existing consensus that hypermobility is not significantly associated with widespread pain or fatigue. The concept of hypermobility spectrum disorder has no basis.
4. MCAS is a term of very doubtful value that may apply to very rare cases of mast cell activation not due to classical allergy. There is no reason to think it has anything to do with EDS or ME/CFS.
5. A number of private practitioners and a small cluster of academics including Peter Rowe, Rodney Grahame and also the BPS enthusiast Hans Knoop have spread a myth that these conditions are associated without any meaningful evidence. Large numbers of patients attend clinics believing they have EDS, POTS and MCAS with no evidence that they have any of these. Encouragement in this belief is a really major problem in healthcare because it leads to a number of serious adverse outcomes.
6. Neurosurgeons are well known for paying little attention to quality of evidence when judging and recommending treatments. Most of the people I contacted were seriously concerned about the inappropriateness of neck surgery in the context of ME/CFS.

I approached a range of people thinking that I would get a range of views. I was surprised to get exactly the same answer from everyone - they were all aware of a huge problem caused by a myth about disease association being spread. The other worrying thing is that although the paediatricians have voiced their concerns in published letters adult physicians seem slow to do anything about it. The recent further publicity about the breast surgeon who appears to have done hundreds of unnecessary mastectomies I think is probably a wake up call to just how little control there is over standards of surgical practice and how resistant the surgical establishment is to doing anything about it.

It is also widely agreed that organisations like the EDS society and Dysautonomia International are part of the problem.

I had never heard of the word trifecta before but it seems remarkably inappropriate, since its meaning derives from a betting result that basically means 'full house' or 'perfect win' (the -ecta coming from perfecta meaning a perfect bet result).
 
Jonathan Edwards said:
Large numbers of patients attend clinics believing they have EDS, POTS and MCAS with no evidence that they have any of these.
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Not really clear on how credible this statement is, at least in terms of POTS. I thought there were tachacardia and or/BP change requirements to qualify for a POTS diagnosis. I seem to remember that there are tests for MCAS as well, but I could be wrong; my memory is suspect.

But I'm pretty confident about the POTS thing. So why claim that there are large numbers of POTS patients with no evidence of POTS? This strikes me as similar to the myth being promulgated by a cluster of old-time TBD researchers that most patients claiming to have persistent Lyme never had evidence of Lyme in the first place.
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Moderator note: This post has been copied and posts continuing the discussion of POTS will be moved to this thread:
POTS - definition, diagnosis and symptoms

 
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JenB said:
...My medical costs (not including travel) came out to about $7,000 due to one aspect of a procedure that was oddly not covered. They only covered my plastic surgeon’s wound closure up to a certain amount, something I am still fighting.

If I had paid out of pocket, my expenses (not including thyroid surgery) would have been roughly $400,000-$500,000 for four procedures and cumulatively, six weeks of hospital stay. This is in part because expenses are grossly inflated in the US. My insurance only paid about 50% percent of this. I do not owe the balance...
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Unsure what the statement I have highlighted in bold means.

Do you mean that the hospital waives the deficit? Or that the cost to an insurer is about 50% lower than what the hospital would charge an uninsured, self-financing patient?
 
Esther12 said:
...At the same time, I don't know how much responsibility it's fair to apportion to patients who are just talking about a procedure that they believed helped them (this is a common quandary with people claiming that they recovered following x). Though if there are private groups where people are being encouraged to pursue questionable testing for suitability for this surgery, that seems like a really bad idea.
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But in Jen's case, I would say she goes beyond "just talking about a procedure that they believed helped them".

For example, her Medium platform posts and this thread of pinned Tweets on Twitter. You will need to click on the Tweet to unroll the series of Tweets:

 
Jonathan Edwards said:
By all means listen to what Dr B has to say but one could have hoped for a more enlightening comment.
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I agree that listening to what Dr Bolognese has to say and whether it makes sense, is ok. But by posting a picture with all the OMF people listening to his presentation and with a comment suggesting they are collaborating, they are giving him undue respectability.

I'm concerned that if this whole CCI-surgery thing were to backfire, pictures such as these will be used to discredit the OMF and consequently the ME research community as a whole.
 
Michiel Tack said:
I agree that listening to what Dr Bolognese has to say and whether it makes sense, is ok. But by posting a picture with all the OMF people listening to his presentation and with a comment suggesting they are collaborating, they are giving him undue respectability.

I'm concerned that if this whole CCI-surgery thing were to backfire, pictures such as these will be used to discredit the OMF and consequently the ME research community as a whole.
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It makes me curious to know who is in the audience, students, lab researchers, everybody BUT surgeons and neurologists? And did this neurosurgeon discussed the failure/complication rates which includes death and other adverse events, but also includes those who were not made better? How does this surgeon explain that he is one of 2 in the world to do these kinds of surgeries?
 
Milo said:
It makes me curious to know who is in the audience, students, lab researchers, everybody BUT surgeons and neurologists? And did this neurosurgeon discussed the failure/complication rates which includes death and other adverse events, but also includes those who were not made better? How does this surgeon explain that he is one of 2 in the world to do these kinds of surgeries?
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Didn't Jen Brea also give a presentation at Stanford a few weeks ago?
 
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