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

Yes, I have made this point and mentioned a manuscript that should come out soon that highlights the failings in harm surveillance.

 

Stanford researchers looking for ME/CFS patients with CCI

June 19, 2019

...The aim is to compare how ME/CFS patients with CCI are similar to or differ from other ME/CFS patients and healthy controls, and to measure changes (if any) in patients pre — and post — surgery...

and

https://twitter.com/user/status/1141448004689252352

 

I am missing something here?

I don't know whether it is, but if the nanoneedle test* is being used for this pre and post op ME/CFS [sic] and CCI surgery study...

the nanoneedle study was a pilot, using n=20 ME, CFS patients, n=20 healthy control, no sick controls and not yet subject to a replication study.

How meaningful might results be if applied to another study group when the use of this test to distinguish between ME, CFS patients and healthy controls has not yet been replicated?


*Edited to add: Trish received the following response to her email enquiry requesting further information:

 

So this is presumably an "add on" to an existing study? I agree, it seems odd not to link to the existing study's protocol page.

 

Also strikes me as odd that a member of the public is putting out a call for prospective study participants prior to Stanford, themselves, calling for potential participants.

 

Well done, Trish.

 

"They are looking for patients who:

• Have been diagnosed with ME/CFS
• Have been diagnosed with craniocervical instability (CCI)
• Are pre-surgery, post-surgery, or not planning to have surgery"

 

Has this study been approved by the research ethics committee at Stanford?

 

Are Stanford now sub-grouping all different types of ME for purposes of comparison? Or is it just the one?

 

The only information I have found, so far, for this additional study group is the content of the call from Jen Brea.

 

Janet Dafoe needs to stay off twitter. I for one am not interested in studying mercury, CCI etc as it relates to ME.

This is how it's done!
https://twitter.com/bsw5020/with_replies

 

I think we've lost this. Completely. ME/CFS is what Jen Brea says it is.

It's been heading in this direction for a long time. We're almost completely there.

 

It's pointless reading too much meaning from tweets like that.

 

https://twitter.com/user/status/1143102894276616192

 

Page 33

https://www.cdc.gov/nchs/data/icd/Topic-packet-Sept-2018.pdf

ICD-10-CM Coordination and Maintenance Committee Meeting September 11-12, 2018

Topic Packet One:


Ehlers-Danlos Syndromes (EDS)

A proposal to create thirteen new codes for Ehlers-Danlos Syndrome (EDS) was presented at the March 2018 Coordination and Maintenance Meeting.

The new codes that were proposed were in recognition of the thirteen specific types of EDS that were published by the International Consortium on EDS. The classification and manuscripts about EDS were published in the March 2017 Part C Seminars in Medical Genetics issue of the American Journal of Medical Genetics and are all available through the Ehlers-Danlos Society (http://bit.ly/EDS2017papers).

However, based on public comment and the low prevalence of some types of EDS, a revised proposal to expand the more common and more severe types of EDS is being resubmitted for consideration.

Ehlers-Danlos syndromes are a clinically and genetically heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin hyperextensibility or laxity, and tissue fragility affecting virtually every organ system: skin, ligaments, joints, bone, muscle, blood vessels and various organs.

The prevalence and most common types of EDS cited in the GeneReview articles are:

hypermobile (hEDS) - 1:5000 https://www.ncbi.nlm.nih.gov/books/NBK1279;
classical (cEDS) - 1:20,000 https://www.ncbi.nlm.nih.gov/books/NBK1244
and vascular (vEDS) - 1:200,000 based on identification of 1500 affected individuals https://www.ncbi.nlm.nih.gov/books/NBK1494/.

The most severe in presentation and the only one associated with early mortality is vascular (vEDS). “The long-term outlook (prognosis) for people with vascular Ehlers-Danlos syndrome is generally poor. It is typically considered the most severe form of EDS and is often associated with a shortened lifespan. Among affected people diagnosed as the result of a complication, 25% have experienced a significant medical complication by age 20 and more than 80% by age 40. The median life expectancy for people affected by vascular EDS is 48 years.[4][2]”
https://rarediseases.info.nih.gov/diseases/2082/ehlers-danlos-syndrome-vascular-type.

A specific ICD-10-CM code for the most common and severe types will be of value to the patient and the clinician. Regardless of the type experienced, EDS is a life- long progressive condition that has a major impact on the lives and daily function of most living with EDS.

This proposal is resubmitted jointly by Brad Tinkle, MD PHD, Division Chief of Clinical Genetics at Advocate Children’s Hospital and member of the Steering Committee of the International Consortium on EDS and Kay Jewell, MD Consultant, Acer Therapeutics Pharmaceutical Company.

(Proposed) TABULAR MODIFICATIONS

New/Revise subcategory

Q79.6 Ehlers-Danlos Syndromes

Add:

Q79.60 Ehlers-Danlos syndrome, unspecified
Q79.61 Classical Ehlers-Danlos syndrome

Classical EDS (cEDS)​

Q79.62 Hypermobile Ehlers-Danlos syndrome

Hypermobile EDS (hEDS)​

Q79.63 Vascular Ehlers-Danlos syndrome

Vascular EDS (vEDS)​

Q79.69 Other Ehlers-Danlos syndromes

-------------------------------

The following new codes were approved by NCHS and added to the FY 2020 ICD-10-CM Tabular List that was posted a few days ago:

FY 2020 ICD-10-CM Tabular List:

https://dxrevisionwatch.files.wordpress.com/2019/06/icd10cm_tabular_2020.pdf

[28MB]

Page 1148:

Q79.60 Ehlers-Danlos syndrome, unspecified
Q79.61 Classical Ehlers-Danlos syndrome

Classical EDS (cEDS)​

Q79.62 Hypermobile Ehlers-Danlos syndrome

Hypermobile EDS (hEDS)​

Q79.63 Vascular Ehlers-Danlos syndrome

Vascular EDS (vEDS)​

Q79.69 Other Ehlers-Danlos syndromes


[Edited to add link.]