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

Question about symptoms.

Is numbness of the face an uncontested symptom of either CCI or ME/CFS?

Also any opinion on the list of symptoms for CCI listed on the MEpedia page.

Thank you.
@JonathanEdwards

 

I fill out a long questionnaire asking about symptoms and diagnoses (many of which are unrelated to that specific specialty) at almost any specialist I visit.

Generally they're offended that I have ticked 80% or so of the available symptoms, but none of the major diagnoses (as they typically don't suggest the major diagnoses that I actually have, and I am reluctant to put down "autoimmune disease" when I am not sure of this).

 

Numbness of the face could have a lot of causes, including multiple sclerosis, Bell's palsy, fibromuscular dysplasia, neurofibromatosis, and other causes.

Bell's palsy (one-sided facial weakness) is reported in ME as well as Lyme disease. Numbness of the face is reported in CCI.

(information from Isabel symptom checker, the Zebra network, etc.)

 

Numbness of the lips and round the mouth is also seen to be a positive symptom of hysteria. We can't win.

 

It isn't really worth asking this question because what matters to a physician is not numbness of the face but the precise distribution of the numbness and the status of 50 other neurological findings in combination.

Numbness of the face is the sort of symptom that requires assessment by a doctor with a neurological training, not a GP (or these days it might be a nurse or pharmacist!).

In simple terms ME is not an explanation for numbness of the face.
CCI is not an explanation for numbness of the face except in a very specific context of other significant neurological findings.
99% of cases of numbness of the face are due to neither of these.

 

Numbness of the face is not a symptom of ME or CFS.

 

This from Jen Brea, figurehead and co-founder of MEAction, 9 hours ago:

https://twitter.com/user/status/1169380157666185216


[Edited to add: Tweet has since been deleted.]

I am concerned with the way in which crowdfunders for individuals diagnosed with hEDS and CCI are co-opting the term "severe ME". And here we have Brea, herself, stating:

"Michaela has severe ME due to CCI, and CCI due to hEDS."

At one point, Brea was saying "ME symptoms" in the context of receiving a diagnosis of CCI. Now she's made the leap to

"Michaela has severe ME due to CCI..."​

Jen Brea is not Mihaela's physician.
Jen Brea is not a clinician nor a researcher.

There is an absence of evidence for CCI as causality of ME or "severe ME".
Yet Jen now presents this as though it were a given.

MEAction is a registered 501(c)(3) not for profit organization.
Where is their duty of care?
Why is MEAction's board not reining her in?



Extracts from the text of the fundraiser:

https://www.gofundme.com/f/6sunrr-give-mihaela-a-chance-to-live

"...After a long struggle and a series of incorrect/vague diagnoses, Mihaela has been diagnosed with CCI, cranio-cervical instability as a result of a hypermobility spectrum disorder, because of the abnormal mobility of her upper vertebrae this puts pressure on her brainstem and spinal cord causing a range of symptoms that are often referred to as severe ME. The doctor who we hope will operate on Mihaela has told us that her condition will worsen unless she gets the operation. In its final stages this illness will lead to total paralysis and even death. This is why we need your help now. . . Despite all the risks, we took the chance of going to London’s Medserena clinic for a stand-up MRI to see if this might be true in Mihaela’s case too.

"We have one chance of saving Mihaela’s life: We became aware of stories like those of Jennifer Brea and Jeff Wood, patients like Mihaela who were diagnosed with CCI after having previously received the diagnosis of ME, after undergoing spinal fusion surgery they were able to lead normal lives again and the majority of their symptoms disappeared.

https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/
https://www.unrest.film/"

These two patients are just the tip of the iceberg, on internet forums about ME/CFS there are growing numbers of people who are discovering that they have spinal irregularities.

https://forums.phoenixrising.me/threads/tracking-cci-aai-mri-treatment-outcomes.62720/

". . . The scan confirmed that Mihaela has craniocervical instability/ cci, as a result of her hypermobility spectrum disorder. After contacting two surgeons, Dr Gilete and Dr Bolognese (who are experts in spinal fusion operations), they have both confirmed that Mihaela is a candidate for the surgery that could change her life and save her from this terrible illness.

https://drgilete.com/testimonials/"

 

I agree with all you say, Suzy. Jennifer Brea is not a medical authority, has no evidence whatsoever that CCI causes severe ME, but is persisting in her CCI = ME narrative to the point where we now have crowdfunders like this using highly questionnable wording. It is alarming in my opinion that she goes on unchecked, as she does.

 

I think that #MEAction have 'left the building' since JenB decided to stop posting here.

Would be nice to have some kind of official statement from #MEAction network

@JaimeS @EspeMor

@chicaguapa

 

not ok. not ok at all

 

https://twitter.com/user/status/1169570191900106752

Code:

https://twitter.com/cem_oezdemir/status/1169570191900106752

Cem Özdemir is a prominent member of the German parliament.

The football team VfB was relegated to the second division of the German league only this spring: https://en.wikipedia.org/wiki/VfB_Stuttgart

The Tweet says:
"#Point of honor ‼️ @DennisME1893 is ill with ME/CFS. He urgently needs donations for a necessary operation."

Not able to comment at the moment.

(A longer text torso of my view of the German situation is still staying in my drafts folder, now just added: I wish Dennis all the best. At the same time, I reiterate my concerns regarding CCI surgery for people diagnosed with ME.
Anyway, I appreciate Dennis' effort to raise awareness and think the article reflects the situation in Germny quite welI.
Regarding the Tweet, Iwish we would have this sort of awareness for good ME research - ETA: hoping that this could follow in the long term.)

 

It appears that the Tweet in post #627 has now been deleted by Ms Brea.

 

Their silence speaks volumes.

 

I agree and I am scared that severe ME patients could become much worse because of this operation and the effort to travel this far.

 

Oh gawd... I hope reality will make me eat my words and all of this works out in the end but if he does not have any good reason to assume this operation will help him apart from his sheer desperation this probably is not what we want the already incredibly abusive medical community over here to see. I guess there is the angle that people are so desperate that they gather 100k to voluntarily try out operations without waiting for really solid evidence and everything, but as far as I am aware some patient from Austria already died trying something like that (maybe I even read it in this thread, I apologize if I am being redundant, I can't really read or re-read 30-page-threads).
And I am saying this as someone who has a painful neck, assumes his ME is somehow related to something-or-other about collagen elastin MMPs etc and a progressively non-stabilizing passive stabilization apparatus and so on who could theoretically be a target for an OP like this in the future. But then again, I already lost over a decade so I don't feel like 1-2 years more is worth the risk vs dying after going through all this... Maybe this can highlight how badly we are lacking overall support.

Mr Özdemir is pretty high-profile btw. It is true that 'desperate patient needs to crowdsource life-saving operation' is a sexier pitch than 'we really should have done more structured research into a disease that >200k people have since we don't even know how basic cortisone affects them after several decades of opportunities to map stuff out', but in this instance at the current point in time I am not even sure I'd be mad at an insurance company not wanting to cover the costs unless there is more to the case that would at least heavily imply the patient in question would benefit.

 

another one
https://twitter.com/user/status/1169619800353468417

 

The bottom line for me is that anyone in a European or North American country who genuinely has the clinical indications for cervical fusion for CCI should get surgery funded without problems at a local neurosurgery centre. I had no trouble getting neurosurgeons to operate when needed. There is no need for someone in Germany to go to Spain.

Or Holland.

 

There's now a top Dutch neurosurgeon (not sure if I'm allowed to mention his name) who will operate someone and will, as far as I know, conduct a study on a few patients for over a couple of years. Sadly it won't be covered with the indication of CCI and ME.

 

CCI is an indication enough. The indications for operating on CCI are not related to ME.

 

One hopes Jen Brea truly realises the irresponsiblity of her wording but the fact is she can delete her tweet but for months now she has been using her platform as director of UNREST to flood social media with her CCI/tethered cord narrative, claiming she has also been cured of ME. Her misinformation - entirely unevidenced, purely anecdotal - about CCI causing severe ME is bleeding into vulnerable patients' lives. We have seen today, thanks to Suzy's post, a severely ill patient with a CCI diagnosis, whose crowdfunder claims that her symptoms are 'often referred to as severe ME'; this is only true in the new ME world created by Jen Brea. We have a German patient with a very severe ME diagnosis who, only because Jen and Jeff got better, is also crowdfunding and seeking fusion surgery abroad for CCI. it is an appalling situation for patients to be in and Jen - who, moreover, had all this covered by insurance - seems to have no qualms about any of it.

Edit:typo