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

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.

 

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".

 

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

 

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.

 

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

 

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.

 

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.

 

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.