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

But then her view is:

Jennifer Brea
@jenbrea

I also join Walker in saying Lyme, mold, viral infections, EDS, POTS, dysautonomia, MCAS, CCI/AAI, Chiari, etc, this is not a zero sum game. These may all be deeply intertwined.

8:06 AM · Oct 31, 2019

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Jennifer Brea
@jenbrea

Oct 31

*deeply intertwined with #MECFS, and each other.

 

Yes, everything we don't know is deeply intertwined and has a common feature... We don't know.

 

I'm wondering how long it's going to be before the organization known as #MEAction extends its remit to include all those conditions that Jen considers may be "deeply intertwined with #MECFS, and each other."

 

Perhaps a rebranding is called for.

MUSaction, perhaps.

 

This is beginning to feel a bit Sharpean. (Social) media activism as 'science'.

 

Re. chronic Lyme, mold, viral infections, EDS, POTS, dysautonomia, MCAS, CCI/AAI, Chiari, etc.

I'm going to agree with Jennifer that these could indeed be related to each other.

I doubt that she wants to create a diagnosis that will include everyone (as MUS does). Rather she is talking about possible shared pathways. There is also the possibility that various syndromes may be one and the same disease.

I'm not sure that all these diagnoses really describe a separate disease. It could be, but it could also not be. Is mold toxicity really a thing? If not, what do these patients really have?

If we don't study them we will never find out. Gulf war syndrome was sometimes said to be the same illness as ME/CFs. Only by studying both we found out that it seems to be a different disease despite great similarity in symptoms. It could have easily gone the other way though.

 

Jennifer has previously written on Twitter that her ‘ME symptoms were most certainly a function of CCI and tethered cord’, but after being challenged, added that ‘she shouldn’t jump the gun and assume that is true in anyone else’s case’.

And yet she is jumping the gun constantly, while bombarding social media with her CCI hypotheses. And embracing other poorly understood illnesses under her nightingales hashtag, alongside ME. We have fought so hard for recognition of ME for decades and yet Jen is diluting all of this by subsuming ME into a veritable soup of illnesses.

Worth remembering that Jen was ill for seven years with a diagnosis of ME. Seven years is a relatively short time, those of us ill for decades, or carers for decades, can only look on, baffled, as she assumes this ‘expertise’. Her carelessness with language is upsetting and angering many of us.

She is also excluding - I imagine, unwittingly - many ME sufferers from the conversation with her unrelenting commentary on CCI and ME. CCI is simply not an issue for most pwME. It is irrelevant.

Her inconsistency and hyperbole are problematic. When speaking about her thyroid cancer, she tweeted ‘my cancer was entirely asymptomatic and I had normal thyroid levels throughout’. But later wrote, ‘I did feel inflammation in my neck for years b/c of the cancer’.

This kind of contradiction is not infrequent with her.

Worth saying, I helped Jen in the beginning, as many of us did, when she was making her film. But as dxRevision says, she blocks those who challenge, and many longterm pwME, who have way more experience of the illness, the history, the politics, are now blocked, our experiences/knowledge are somehow unimportant in Jen’s scheme of things. It is her prerogative to block, of course, but increasingly, it seems she really only has room for those who agree with her. My observation is if you disagree you will get a cascade of tweets directed AT you, rather than actually engaging WITH you.

For many reasons, she has, sadly, lost credibility, IMO. I can no longer see her as a reliable narrator on ME. She is in a unique position of having fully recovered, with an established global advocacy platform for ME. With this fabulous bonus of good health, she should be using that platform responsibly. And I don’t think she is.

 

One of the surgeons involved in this is now openly promoting craniocervical fusion as a treatment for CFS:

https://www.infosalus.com/asistenci...s-sindrome-fatiga-cronica-20191104142530.html

 

He won't need an advertising and publicity budget.

 

This is extremely concerning.

 

Says they've treated 15 patients who have improved and they're going to do a clinical study (I think, my Spanish is rusty).

 

Is that body on the table in the photograph alive?

 

Almost correct it says a group of more than 15 patients.

It then says that it looks like probably a group of Me/cfs patients, but not all, are also suffering from CCI. And that the surgical treatment for CCI has improved or even made disappear the symptomatology of Me/cfs. That's a quotation from a doctor called Bartolome Oliver.

It says at the moment, this team of neurosurgeons is collecting these data in order to realise a clinical study. (I am not sure if that means doing a study with the data that they already have? I'm not used to scientific Spanish haha)

 

"Openly promoting"? Or simply reporting what they have found in a group of patients?

 

Rather different to how the Norwegians behaved when M.E. sufferers who were given rituximab started improving. They warned everyone not to try it at home and told doctors not to prescribe it for M.E. until the trials were complete, which took a couple of years. I don't remember them trumpeting it on a website at such an early stage.

 

Maybe because there's a difference in the potential for patients to access it. Rituximab is a drug, and as such there's potential for anyone to get it (through a doctor prescribing, or through dodgy online pharmacies, or even through illegal methods). Whereas CCI surgery is something that really only a few surgeons will do. Less warning needed.

 

I think that it always used to be the case that these surgeries - however controversial and unnecessary they were - were only offered to a small number of `EDS' patients - putting the considerable dispute over the validity of that diagnosis aside - who also had symptoms referrable to cervical structures, and so there was some superficial, albeit very weak, rationale for performing the surgery. (In the case of genuine instability resulting from trauma, no-one in the UK would have difficulty in obtaining surgery on the NHS.)

Hypermobility is not mentioned in this article - there is no pretence of it; the surgery is posited as a treatment for ME.

To go to the media and say that this surgery "puede mejorar y en gran medida hacer desaparecer la sintomatología del SFC/EM" and to say, of ME patients, "muchos de ellos estaban en la cama todo el día y ahora pueden recuperar su día a día" - in the circumstances, I stand by my description of that as open promotion.

This is not a trial of some otherwise benign supplement. If this trend continues, there are going to be deaths.