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

[Trish]

Not pointless to me, still ill today, and being part of a documented Ramsay outbreak in early-mid 1980s,...

Sorry, @Nasim Marie Jafry, that wasn't intended as a dig at you, though I can see it came out that way. I apologise.

I am as concerned as you and others about Jen publishing her unproven theories and giving medical advice. I think if I were part of a charity whose leader was acting in this way, I would either withdraw from the charity, ask them to desist, or remove them from any prominent role in that charity.

As for whether we all have the same illness, I have no idea. I think all of us who have arrived under the ME, ME/CFS, and CFS umbrella can only wait for the research to find that out. Very few of us, I think, have as clear a diagnosis as you, Nasim, but we are all very sick and need medical research and support. I've just passed my 30th anniversary since my ME, or whatever it is, started, so it's much on my mind how long some of us have waited for help.

 

[Guest 102]

Sorry, @Nasim Marie Jafry, that wasn't intended as a dig at you, though I can see it came out that way. I apologise.

I am as concerned as you and others about Jen publishing her unproven theories and giving medical advice. I think if I were part of a charity whose leader was acting in this way, I would either withdraw from the charity, ask them to desist, or remove them from any prominent role in that charity.

As for whether we all have the same illness, I have no idea. I think all of us who have arrived under the ME, ME/CFS, and CFS umbrella can only wait for the research to find that out. Very few of us, I think, have as clear a diagnosis as you, Nasim, but we are all very sick and need medical research and support. I've just passed my 30th anniversary since my ME, or whatever it is, started, so it's much on my mind how long some of us have waited for help.

Thanks for this, Trish, much appreciated - and I am sorry you have been ill for so long too. I realise I am unusual to have had such a clear dx, but had I become ill ten years later I would have no doubt been thrown into the Wessely CFS bucket of neglect too. But since I lived a classic enteroviral onset of ME in 1982, and took part in clinical trials in the late Behan’s neurology clinic/ward, I think in the context of all that has gone on in ME world since then, politically, it has def given me some valuable insight. And given the paucity of funding for biomedical research into ME since nineties it perhaps makes me doubly frustrated that JB is giving herself so much airtime for her personal CCI theories. I do not think this is where the focus of ME research should lie.

 

[Guest 102]

Jen Brea is holding what looks like a Q&A on Facebook right now. It says people can ask her anything, but a lot of people are asking her questions as if she has medical expertis, about their health and what course of action she recommend they take.
And again she gives her view of what ME is. Which is fine by me if she was an unknown ME-patient and not the high profile (former) ME-patient with a huge platform, and co-founder of MEAction that she is.

I don't understand her reasons for doing this?

You don't understand her reasons, Anna H, I think many of us are puzzled by Jen's ongoing intense commentary on social media re. CCI and ME. Can I make a suggestion? - and this is clearly a guess as I cannot obviously know her reasons.

My impression is Jen's heavy platforming of CCI being a possible 'subset' of ME is as much for her own confirmation as having unquestionnably been an ME patient, as it is to help/inform other ME patients with similar symptoms.

It certainly appears she has a lot invested in the 'CCI causes ME' theory, for whatever reasons.

I can honestly say, though, that if I developed *new* disabling symptoms - as both Jen and Jeff did, post-surgeries - which led me to a different diagnosis of CCI (and in Jen's case, tethered cord) and subsequent full recovery through neurosurgeries, I would no longer think I had ME, in spite of having been diagnosed 36 years ago, and in spite of having spent ten years writing and publishing a novel about ME. I feel certain I would recognise that I had probably been misdiagnosed - and be deliriously happy I no longer had ME. I would not then be shoehorning my new diagnosis of CCI into ME.

But my circumstances are v different than Jen's. Firstly, I have never had reason to doubt an ME diagnosis, and I have no reason at all to think I have CCI or tethered cord. And neither am I co-founder of a global ME org, and neither is my film being used as continuing medical education in ME.

Still, I just cannot understand why, after recovering from seven years of hellish illness - and terrifying surgeries - she is almost evangelical about a mechanical cause for ME. By all means, yes, consider it as a possibility but to be giving it the relentless scrutiny on social media that she is, devising these online polls etc, seems to be way over-egging, and is just baffling to me.

So I wonder if for Jen, her ME diagnosis is so bound up with her patient identity/her film and her ME ActNet organisation, that to have been an ME patient is almost existential for her - the 'existential' is taken from tweet of another USA longterm advocate some time ago, not my own description, but I agree. To clarify, please know I am not suggesting this at all to be inflammatory, Jen was diagnosed by top specialists in USA, it is not her fault, if she was misdiagnosed (and I am v careful to say *if*). There is just no current explanation as to why a post-viral classic ME would be banished by addressing mechanical problems.

 

[Trish]

Does anyone know if Jen is making a follow up film to Unrest telling her CCI story? I think I remember her indicating a wish to develop a career as a film maker.

 

[Anna H]

You don't understand her reasons, Anna H, I think many of us are puzzled by Jen's ongoing intense commentary on social media re. CCI and ME. Can I make a suggestion? - and this is clearly a guess as I cannot obviously know her reasons.

My impression is Jen's heavy platforming of CCI being a possible 'subset' of ME is as much for her own confirmation as having unquestionnably been an ME patient, as it is to help/inform other ME patients with similar symptoms.

It certainly appears she has a lot invested in the 'CCI causes ME' theory, for whatever reasons.

I can honestly say, though, that if I developed *new* disabling symptoms - as both Jen and Jeff did, post-surgeries - which led me to a different diagnosis of CCI (and in Jen's case, tethered cord) and subsequent full recovery through neurosurgeries, I would no longer think I had ME, in spite of having been diagnosed 36 years ago, and in spite of having spent ten years writing and publishing a novel about ME. I feel certain I would recognise that I had probably been misdiagnosed - and be deliriously happy I no longer had ME. I would not then be shoehorning my new diagnosis of CCI into ME.

But my circumstances are v different than Jen's. Firstly, I have never had reason to doubt an ME diagnosis, and I have no reason at all to think I have CCI or tethered cord. And neither am I co-founder of a global ME org, and neither is my film being used as continuing medical education in ME.

Still, I just cannot understand why, after recovering from seven years of hellish illness - and terrifying surgeries - she is almost evangelical about a mechanical cause for ME. By all means, yes, consider it as a possibility but to be giving it the relentless scrutiny on social media that she is, devising these online polls etc, seems to be way over-egging, and is just baffling to me.

So I wonder if for Jen, her ME diagnosis is so bound up with her patient identity/her film and her ME ActNet organisation, that to have been an ME patient is almost existential for her - the 'existential' is taken from tweet of another USA longterm advocate some time ago, not my own description, but I agree. To clarify, please know I am not suggesting this at all to be inflammatory, Jen was diagnosed by top specialists in USA, it is not her fault, if she was misdiagnosed (and I am v careful to say *if*). There is just no current explanation as to why a post-viral classic ME would be banished by addressing mechanical problems.

I think you might be right.
My question was partly rethorical. I have also speculated a lot as to why JB continues to spread her theory and give advice on SM, and her seeming inability to see the bigger picture and negative impact of her behavior.

Like you said it might be a sort of 'existential' crisis of identity. In a way ME 'made' her. Would she have become this famous person if she hadn't become ill in the first place? There could be lots more to it, guilt for having recovered, like some kind of 'survivors guilt', and therefore determined to help others recover.

It don't want to speculate too much here though, I just wish she would handle whatever issues she's working through in another way. Like by going to see a therapist. They can actually do a lot of good when they're not trying to treat ME.

Edit: spelling
ETA: At the end of the Q&A JB mentions she broke down last year and says this about the years being ill and then recovering:
"it was a lot, and I put it all in a box and it just flew open after my surgeries. I had no idea who I was and what I was going to do and I'm still trying to figure it out to be honest".

 

[Sly Saint]

https://solvecfs.org/wp-content/uploads/2019/09/Diagnosing-and-Treating-MECFS-_V1-Final.pdf

THE IMPORTANCE OF DIFFERENTIAL DIAGNOSIS
Some of the symptoms of ME/CFS are also observed in healthy people as well as people affected by other illnesses.
Appropriate treatment of these other conditions may completely resolve the patient's symptoms. Thus, it is important to distinguish between ME/CFS and these other conditions. Important diseases in this category include but are not limited to the following:

NEUROLOGIC DISORDERS
Multiple Sclerosis, Parkinson's Disease, Myasthenia Gravis,
Vitamin B12 deficiency, Cerebrospinal Fluid Leak, Chiari Malformation, Traumatic Brain Injury, Spinal Stenosis, Craniocervical Instability, Seizures

 

[butter.]

You don't understand her reasons, Anna H, I think many of us are puzzled by Jen's ongoing intense commentary on social media re. CCI and ME. Can I make a suggestion? - and this is clearly a guess as I cannot obviously know her reasons.

My impression is Jen's heavy platforming of CCI being a possible 'subset' of ME is as much for her own confirmation as having unquestionnably been an ME patient, as it is to help/inform other ME patients with similar symptoms.

It certainly appears she has a lot invested in the 'CCI causes ME' theory, for whatever reasons.

I can honestly say, though, that if I developed *new* disabling symptoms - as both Jen and Jeff did, post-surgeries - which led me to a different diagnosis of CCI (and in Jen's case, tethered cord) and subsequent full recovery through neurosurgeries, I would no longer think I had ME, in spite of having been diagnosed 36 years ago, and in spite of having spent ten years writing and publishing a novel about ME. I feel certain I would recognise that I had probably been misdiagnosed - and be deliriously happy I no longer had ME. I would not then be shoehorning my new diagnosis of CCI into ME.

But my circumstances are v different than Jen's. Firstly, I have never had reason to doubt an ME diagnosis, and I have no reason at all to think I have CCI or tethered cord. And neither am I co-founder of a global ME org, and neither is my film being used as continuing medical education in ME.

Still, I just cannot understand why, after recovering from seven years of hellish illness - and terrifying surgeries - she is almost evangelical about a mechanical cause for ME. By all means, yes, consider it as a possibility but to be giving it the relentless scrutiny on social media that she is, devising these online polls etc, seems to be way over-egging, and is just baffling to me.

So I wonder if for Jen, her ME diagnosis is so bound up with her patient identity/her film and her ME ActNet organisation, that to have been an ME patient is almost existential for her - the 'existential' is taken from tweet of another USA longterm advocate some time ago, not my own description, but I agree. To clarify, please know I am not suggesting this at all to be inflammatory, Jen was diagnosed by top specialists in USA, it is not her fault, if she was misdiagnosed (and I am v careful to say *if*). There is just no current explanation as to why a post-viral classic ME would be banished by addressing mechanical problems.

You do not know what is ME.

Your ME could be totally different from any other persons ME with the same symptoms, at this point your ME is not more ME than anyones else ME, because nobody knows what is your ME or anyones ME.

You definitely have reason to doubt your ME, no matter your onset, severity or course of disease. ME is nothing more than „we do not know what these people with these set of symptoms (varies wildly!) have“.

That is a bitter pill to swallow, I know.

There will be subsets like CCI or postvural HHV6 or Enterovirus, until there is nothing left of ME.

That is just my opinion of course.

 

[Jonathan Edwards]

https://solvecfs.org/wp-content/uploads/2019/09/Diagnosing-and-Treating-MECFS-_V1-Final.pdf

Is this a new text on the site? If so, who on earth put it there? It is totally inappropriate.

 

[Guest 102]

I just watched ten minutes. I am bemused/confused when she insists she had RamsayME - and claims Coxsackieb4 onset. Yet she had v high fever at onset, is documented in film, I think 104, and yet Coxsackie is not associated with high fever. Dr E Dowsett has charted this in Melvin Ramsay’s book. (And JB did not have CBV testing until much later I believe, Coxsackie onset is certainly not mentioned in her film, just v high fever.) I had proven Coxsackieb4 onset, as part of outbreak in west Scotland early 1980s, and v diff symptoms to JB - severe GI symptoms and nausea and chest pain, no high fever. But apart from that, our illnesses seem entirely different in trajectory. Obv we are not all w ME the same, there are variations as in any illness, but I have never recognised the illness JB has described as the same illness I was dxd with in 1984. So it did not surprise me when the root of her illness was found to be mechanical.

Just wish to clarify my frustration over the Coxsackie issue, aside from the v high fever trigger/onset portrayed in film not being consistent with CBV.

When I asked J about her CBV onset publicly on Twitter in 2017, she replied, ‘I didn’t have classic symptoms which is part of the problem. My husband did though.’

This surprised me as there was no mention at all in her film of her husband also being ill at onset of her illness. I don’t recall either in any publicity around the film any reference to both of them getting ill at same time. Why leave such important/significant information out of film?

She did, though, in a much later Medium piece entitled ‘I have atypical poliomyelitis’, refer to an unspecified vomiting illness her husband had on vacation some weeks earlier, which she *speculated* may have been an enterovirus. (I also recall she changed her Twitter handle at this time to Jennifer atypical poliomyelitis Brea. I found this a little melodramatic, though I know well ME was *once* labelled as atypical polio, many decades ago.)

I was even more confused, though, when a year later, in 2018, she tweeted, in reference to testing by Chia: ‘I most likely got sick after a Coxsackie B4 infection, which is probably why my onset looks so similar to the pre-84 outbreaks.’

So, on the one hand she said she didn’t have classic Coxsackie symptoms, and on the other, her onset looked so similar to pre-1984 outbreaks. As someone who actually lived through a classic Coxsackieb4 outbreak/ME onset in 1982, I can honestly say her onset did not resemble mine at all.

And there have been significant other inconsistencies/convolutedness on Twitter, as others have observed. This is hardly ideal coming from an ME advocate with a global platform and founder of global charity. On top of the ongoing CCI hyperbole, this is why I, unfortunately, can no longer see JB as a reliable narrator on ME. Above all, we need clarity in our public discourse. We have endured for decades enough obfuscation/ misinformation from BPS crowd.

Want to also say that I can and do still respect/admire UNREST as a work of art but feel strongly if it is being used as CME in USA, there should be an update of JB’s CCI and tethered cord diagnoses and her subsequent recovery through neurosurgeries.

While classic RamsayME is characterised by decades of illness and seldom full recovery, it is also true that none of our narratives are frozen in time - but this mechanical basis being heavily touted is simply not representative of the vast majority of the ME patient population. And while UNREST brings welcome, much needed spotlighting of ME to medical students - the other minor narratives in film are beautifully invoked - they would be misled, IMO, if not aware of JB’s current status.

 

[Guest 102]

You do not know what is ME.

Your ME could be totally different from any other persons ME with the same symptoms, at this point your ME is not more ME than anyones else ME, because nobody knows what is your ME or anyones ME.

You definitely have reason to doubt your ME, no matter your onset, severity or course of disease. ME is nothing more than „we do not know what these people with these set of symptoms (varies wildly!) have“.

That is a bitter pill to swallow, I know.

There will be subsets like CCI or postvural HHV6 or Enterovirus, until there is nothing left of ME.

That is just my opinion of course.

Thank you for sharing your opinion, Butter. There is no bitter pill to swallow that I am aware of. I just dislike inconsistency, hyperbole, convolutedness on social media discussions around the illness I know as ME - and one sees that often with JB. And I actually do not have the same symptoms that Jen and Jeff had, the ones that prompted them to seek further testing and new diagnoses.

 

[Jonathan Edwards]

it's also available via the OMF site; not new (from Aug 2019)
https://www.omf.ngo/2019/09/01/new-guidelines-for-diagnosing-and-treating-me-cfs/

August seems newish to me. If disinformation spreads like this within what ought to be well-informed organisations the situation seems dire.

 

[Trish]

Is this a new text on the site? If so, who on earth put it there? It is totally inappropriate.

Can you explain why? These spinal conditions are listed as different from ME/CFS but may have some overlapping symptoms, and important to differentiate. They are listed in a large table along with all sorts of other unrelated conditions like cancer and asthma.

I take from this table that they are saying that people who are claiming cervical spinal structural problems are causes of ME are wrong. Isn't that a good thing to make that distinction clear?

 

[Dx Revision Watch]

Is this a new text on the site? If so, who on earth put it there? It is totally inappropriate.

About the U.S. ME/CFS Clinician Coalition

The U.S. ME/CFS Clinician Coalition is a group of US clinical disease experts who have collectively spent hundreds of years treating many thousands of ME/CFS patients. They have authored primers on clinical management, have served on CDC medical education initiatives, and are actively involved in ME/CFS research.

Members of this group include:

Dr. Lucinda Bateman - Internal Medicine, UT
Dr. Alison Bested - Hematological Pathology, FL
Dr. Theresa Dowell - Family Nurse Practitioner, AZ
Dr. Susan Levine - Infectious Disease, NY
Dr. Anthony Komaroff - Internal Medicine, MA
Dr. David Kaufman - Internal Medicine, CA
Dr. Nancy Klimas - Immunology, FL
Dr. Charles Lapp - Internal Medicine & Pediatrics, NC
Dr. Ben Natelson - Neurology, NY
Dr. Dan Peterson - Internal Medicine, NV
Dr. Richard Podell - Internal Medicine, NJ
Dr. Irma Rey – Internal & Environmental Medicine, FL

(...)

Authored by the U.S. ME/CFS Clinician Coalition, a group of US clinical disease experts who have collectively spent hundreds of years treating many thousands of ME/CFS patients. They have authored primers on clinical management, have served on CDC medical education initiatives, and are actively involved in ME/CFS research. Ms. Mary Dimmock and Lily Chu, MD, MSHS helped compile the information in this summary.

 

[Guest 102]

https://solvecfs.org/wp-content/uploads/2019/09/Diagnosing-and-Treating-MECFS-_V1-Final.pdf

This looks v interesting, thank you (Chiari, for example, also listed as DD in UK).

‘Appropriate treatment of these other conditions may completely resolve the patient's symptoms. Thus, it is important to distinguish between ME/CFS and these other conditions.’

Having just read above, am interested that Dr Kaufman is one of authors here, so is he now, I am curious, wondering if Jen and Jeff were possibly misdiagnosed? I understand both of them consulted him for ME. And both had full recovery from ME symptoms after fusion surgery. I know Nancy Klimas, another author here, is sceptical about CCI causing ME, she said so on a recent Invest in ME panel in UK.

 

[Barry]

Can you explain why? These spinal conditions are listed as different from ME/CFS but may have some overlapping symptoms, and important to differentiate. They are listed in a large table along with all sorts of other unrelated conditions like cancer and asthma.

I take from this table that they are saying that people who are claiming cervical spinal structural problems are causes of ME are wrong. Isn't that a good thing to make that distinction clear?

Yes, if pwME are also suffering from one or more other comorbid conditions with overlapping symptoms, the confounding factors are potentially major. If not segregated out from a blanket ME/CFS diagnosis, then all manner of confusions, claims and counter-claims, are going to result. Indeed it may well be happening a lot already.

 

[Trish]

Yes, if pwME are also suffering from one or more other comorbid conditions with overlapping symptoms, the confounding factors are potentially major.

I think it's significant that the structural spinal conditions (CCI, AAI, Chiari etc) are not listed as comorbid conditions.

They are on the much wider separate list of differential diagnoses, in other words things that should not be confused with ME.

To me that says if someone, who has been diagnosed with ME, is found to have CCI and all their symptoms resolve after surgery, they were misdiagnosed with ME.

If I am interpreting that correctly, the ME specialist doctors in the USA are saying those who claim CCI is the cause of a subgroup of ME are wrong.

 

[butter.]

Thank you for sharing your opinion, Butter. There is no bitter pill to swallow that I am aware of. I just dislike inconsistency, hyperbole, convolutedness on social media discussions around the illness I know as ME - and one sees that often with JB. And I actually do not have the same symptoms that Jen and Jeff had, the ones that prompted them to seek further testing and new diagnoses.

There is simply no real ME unless there is a biomarker, we will not find one, if there is no subtyping.

You should be happy that cci people get out of the equation.

What kind of symptoms are real ME?

All the best to you.

 

[Guest 102]

I think it's significant that the structural spinal conditions (CCI, AAI, Chiari etc) are not listed as comorbid conditions.

They are on the much wider separate list of differential diagnoses, in other words things that should not be confused with ME.

To me that says if someone, who has been diagnosed with ME, is found to have CCI and all their symptoms resolve after surgery, they were misdiagnosed with ME.

If I am interpreting that correctly, the ME specialist doctors in the USA are saying those who claim CCI is the cause of a subgroup of ME are wrong.

I agree, Trish.

Interesting too that mould/mycotoxins not listed as comorbid either, yet we get so much rhetoric of mould intolerance = ME coming out of USA in particular. I am thinking of Julie Rehmeyer's book. And also JB has also spoken of exposure to black mould being a 'precursor' to her actual viral onset of ME.

There is simply so much confusion around.

Of course one can have sensitivities *as a result of ME*, I myself developed chronic sinusitis from over-zealous use of mothballs (now banned) well over a decade ago, had NHS scan which showed I have inflammation. I can only think my immune system is in disarray and sometimes over-reacts. I think possibly also why I developed bilateral idiopathic uveitis ten years ago, which I think happens to 1 in 100, 000, v uncommon.

 

[Guest 102]

There is simply no real ME unless there is a biomarker, we will not find one, if there is no subtyping.

You should be happy that cci people get out of the equation.

What kind of symptoms are real ME? Your symptoms I suppose?

All the best to you.

I see little point getting in protracted discussions, it takes too much out of me, and we clearly will not agree. I have been ill since 1982, but I am not hyperbolic or inconsistent or contradictory in my narrative. JB on the other hand frequently has been and her narrative is often hard to follow. I have also often spoken often of the different criteria of ME, and when and where one was diagnosed has great bearing. My point is we need clarity, always.

 

[Trish]

I think it's significant that the structural spinal conditions (CCI, AAI, Chiari etc) are not listed as comorbid conditions.

They are on the much wider separate list of differential diagnoses, in other words things that should not be confused with ME.

To me that says if someone, who has been diagnosed with ME, is found to have CCI and all their symptoms resolve after surgery, they were misdiagnosed with ME.

If I am interpreting that correctly, the ME specialist doctors in the USA are saying those who claim CCI is the cause of a subgroup of ME are wrong.

Responding to my last post. Note that post was trying to clarify the position taken by the group of doctors, not an expression of my personal opinion.

I'm going round and round in circles with this.

Since ME by definition requires diagnosis by symptoms that fit one or other set of criteria, I think we have to accept that someone who has those symptoms by definition has ME.

I also think that someone who recovers from ME symptoms after a treatment such as CCI surgery is a mystery we can't at the moment solve. I don't think it's accurate, or appropriate, without being that individual's doctor, for the rest of us to say about an individual 'that person didn't have ME'.

All we can say is, CCI itself rarely coincides with ME, since most people with CCI don't have ME, and most people with ME don't have CCI.

CCI symptoms are different from ME symptoms, so there is no reason to assume someone who has both ME symptoms and CCI symptoms only has CCI, not ME.

It would seem possible that on rare occasions someone could have both ME and CCI, for example if they had ME triggered by an infection, and at some other time were involved in a physical trauma that damaged the neck, such as a bad whiplash. Or even that they were involved in an accident that caused both damage to the neck leading to CCI, and at the same time triggered ME.

If they then have surgical intervention for the CCI, which resolves the CCI symptoms, but their ME persists, as seems to have happened in some cases, then that shows that CCI surgery is not a cure for ME in their cases.

If they have surgery for CCI, which resolves their CCI symptoms, and at the same time find their ME symptoms go into remission, as has apparently happened in some cases, we are left with an unsolved mystery.

While it remains an unsolved mystery, I don't think any of us should take a firm stance on either side of the fence -
- either promoting CCI as a subgroup cause of ME,
- or saying individuals whose ME went into remission after surgery didn't have ME.

The former is more problematic, because it is misleading people into very expensive surgeries they may not need, and causing confusion in the ME community.

The latter is more a matter of personal choice. I prefer not to comment on whether individuals' diagnoses are accurate. I don't think I should do so, as I'm not their doctor.