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

this is quite similar to XMRV times where some were getting access to the researcher- some still do- and back in the days following the publishing of XMRV paper, some patients felt suddenly quite ‘viral’ and demanded to be tested. It got quite nasty on the forums.

Lessons learned: science self-corrects. Desperate patients will do anything. Good science takes time. Each steps of the scientific process is important. Eliminating bias is crucial.

 

Yes, she did. It was mentioned by Janet Dafoe on Twitter.

https://twitter.com/user/status/1220781941181571072


If I'm not mistaken, Jen Brea is also at the Dr B presentation

 

He is not one of only two in the world. There are two in Europe plus a third surgeon who someone was able to convince to do surgery (she passed his criteria, he was just surprised that she was unstable given the absence of physical trauma). A fourth will start doing surgery in a different European country soon as part of a trial.

There are seven surgeons who regularly do this surgery on EDS patients in the US. An eighth surgeon is LA just did this surgery on an ME/CFS patient for the first time. He was also skeptical, but did a full battery of neurological and cognitive testing on her pre-traction and while under traction. The objective changes were so dramatic, he agreed to do surgery. She's just had surgery and is recovering well.

There is also a surgeon in India and a surgeon in Beijing.

There are also some surgeons in Australia who are diagnosing but have only done a handful of surgeries so far.

There are of course dozens upon dozens of surgeons who do this surgery in cases of traumatic accident.

All told, ME/CFS patients have been diagnosed with CCI by 13 different neurosurgeons on three continents. If you include Chiari and stenosis, the number of neurosurgeons doubles.

Not everyone with ME/CFS symptoms has instability. That much is clear. But some people do, and we need to figure out what we can do for these people. Hopefully asking good questions about how many and how to diagnose and what symptoms this causes will lead to safer, more effective surgery and better nonsurgical options.

Diagnoses /= surgery. It means more knowledge about your condition.

 

Do we have data on what percentage of patients with an existing diagnosis of ME or CFS who are evaluated by Dr Bolognese are recommended for surgery?

 

Wasn't it £600.00 for a non validated blood test? I hope the lab refunded those who purchased a test from them.

I remember well the flurry of avatars on the other forum changing one by one to feature mice and the slogan "XMRV positive" appearing under members' names. They wore it like a badge of honour. I observe similar on Twitter with the proliferation, this last six months, of hashtag #hEDS.

 

There is a survey on Pheonix Rising which gives gives information on negative or positive diagnosis for each surgeon. However,I don't think it says whether surgery is recommended
Link to thread & survey spreadsheet

https://forums.phoenixrising.me/thr...er-whether-tested-positive-or-negative.77371/

 

At the other forum, Mattie reveals his testimony after 1 year of CCI surgery, I think it's very enlightening...

Ps. excuse me, english is not my language !

 

It was 400$ USD from what i remember and no, there were no refunds for this test. And yes for badge of honour, just like MTHFR and autoantibody panel.

 

I just read Mattie's post: "Dr. Gilete himself mentioned that CCI may very well come secondary to ME".

Since when did Dr. Gilete become "expert" on M.E?

 

Uhmmm. Since people mentioned him on the forums? A wild guess.

I hope he has been invited for the incoming IACFSME

 

Code:

https://twitter.com/StenHelmfrid/status/1227858452426436608

https://twitter.com/user/status/1227858452426436608

 

there is an increasing need for epidemiological studies on a large cohort of patients, longitunal and very comprehensive. One would hope the NIH study would jump into action with their cohort.

 

I am not sure what you are suggesting is studied?
Before we set up any large cohorts I would like to see some evidence that anyone with ME/CFS actually has had CCI. I have not yet seen any images that show that.

 

It is desperately disturbing that so many people who absorbed ideas that quickly took on a life of their own will not be exposed to caveats that are less 'viral' in social media terms.

I'm still concerned that it's easier to access surgery on demand in some jurisdictions, often limited more by market forces than regulations. Such reverberations might not be obvious to us in our lives, if we ever get to know.

 

I am not sure. @Hip would know this. I believe about 60% of patients who consult with Dr. Bolognese are diagnosed with CCI, but I know not everyone with CCI is offered surgery. He appears to have a cutoff where if you are not sufficiently symptomatic, it will not be offered. And of course, even if you are highly symptomatic, surgery is conditional on additional, in-person invasive testing. Very few people so far (roughly 6 that I know of) have actually made it through the entire process and had surgery. There may be others I do not know of.

EDIT: I see someone did post Hip’s survey above. This should have some of the information you are looking for: https://forums.phoenixrising.me/thr...er-whether-tested-positive-or-negative.77371/ As others have pointed out, being diagnosed does not mean you are offered surgery, and being offered surgery does not mean that a patient necessarily elects to do it.

 

Yes it's around 61% of ME/CFS patients getting tested who are diagnosed positive for CCI with Dr Bolognese, 96% diagnosed positive for CCI with Dr Gilete, 92% positive with Dr Henderson.

The lower figure of Dr B may reflect the fact he has more applications than he can offer surgery to, so conceivably Dr B may cherry pick the best cases which he believes will have the best outcomes.

This is evidenced by the fact that in his emails, where he rejects applicants, Dr B will say "you do not meet our parameters for CCI", or words to that effect. So Dr B is not diagnosing these rejected patients as negative for CCI, but rather saying that the patient does not satisfy the parameters he requires in order to take up their case.

When Dr B says "you do not meet our parameters for CCI", that is counted as a negative diagnosis from Dr B for the purposes of the survey; but that patient may get a positive diagnosis for CCI elsewhere. Indeed there are several cases in the survey where patients were negative (rejected) by Dr B, but positive by another neurosurgeon like Dr G.

The lower figure of Dr B may also reflect a different set of diagnostic criteria he uses. There is a post here about the slightly different diagnostic criteria these neurosurgeons use.

I've also seen one case from Dr G where CCI was diagnosed, but surgery was not offered, I think because it was a borderline case.

 

hi Jonathan, many research questions can be generated, including
-what is the clinical course of the illness,
-what is the recovery rate
-what is the incidence and prevalence?
-what are the co-morbidities and risks of getting these diseases, associated with ME?
-are slow onset and infectious onset different diseases?
-what are the hematologic/ immunologic predictors of disease severity?
-what is the misdiagnosis rate associated with ME?
-what is the ideal health care and surveillance for long term follow up?
-would serial metabolomic and immunological pannel (say, once a year) inform researchers and clinicians on the course of the illness over time? Are there significant differences?
-would serial brain imaging (MRI, fMRI, MRS)(every year or 2) inform researchers and clinicians on the course of the illness over time ? Would they be able to detect changes in the brain and correlate with severity?

There are many more questions. This is a bit off-topic, but they are from my point of view important questions to ask and worthy of researching. Our health care system has failed us over and over, regardless of which country we are from.

 

I agree that there are lots of questions about ME but I am unclear what that has to do with this thread and the recent posts?

 

It is simply that as pts report structural abnormalities to the cervical region, it adds to what we do not know, and how neglected we as a community have been when it comes to exploring what can go wrong. The simple fact of having ME means that in general patients receive less care and less investigations. This has for effect that the feedback loop that informs clinicians and researchers is broken.
I hope i make sense.

And yes i mentioned in my post it was a bit off-topic but worthy of discussing.

 

Actually, I just the other day read a quite reasonable report explaining bio-chemical phenomena that could lead to PENE. Or PEM, as some named it contrary to English language meaning of "malaise" Unfortunately I am incapable of remembering anything for long, let alone a series of bio-chemical cellular events gone wrong. My point: people may experience this as a symptom, but it represents metabolic events gone off track.