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

People with an hEDS diagnosis have more mobile joints - at least some of them. One of the reasons for joint mobility may be having longer ligaments relative to the distance between bony insertion points. This is certainly not the only possible reason, since bone geometry may also contribute (for the elbow) as may muscle length (for the knee). I am not aware of any evidence for actual structural abnormality in people with an hEDS diagnosis beyond the anatomical dimensions that allow wider range. I know of no evidence to suggest that any process weakens ligaments in people diagnosed as hEDS following full growth. In general mobility gets less once growth stops.

Ligamentous lengthening cannot really occur within the ligament because ligaments are build with internal elasticity created by a difference in length between collagen fibres (which when not under stress are crimped) and elastic fibres (which are not crimped when not under stress but can lengthen under stress and allow the collagen to uncrimp. I do not think you can make a ligament more stretchy within its length without damaging it so much that it effectively ruptures.

Ligamentous lengthening can occur at the points of bone attachment. These are loosened up for some ligaments during pregnancy for instance. However for the great majority of ligaments this does not occur except in conditions like rheumatoid arthritis where the bony insertion is eroded away and the ligament breaks free. Nothing like that has been reported in people diagnosed with hEDS as far as I know.

I am not aware of any link between people diagnosed with 'MCAS' and any connective tissue problems at all. Mast cells take part in inflammation but they do not contribute to connective tissue breakdown. They produce the acute element of inflammation seen in a bee sting, which resolves without any tissue changes. As far as I can see the suggestion of a link between MCAS and connective tissue problems comes from physicians with no training in connective tissue pathology or immunology.

 

Thank you Jonathan, that’s just as I thought, that there isn’t any evidence of a process of deterioration in connective tissues due to MCAS or hEDS, which could cause spinal issues to develop (or other structural problems). I’ve seen posts on social media from time to time which appear to assume it.

 

Statement from ForwardME re spinal surgery

https://www.meresearch.org.uk/forwa...slxNXq1QUV-tnzoTlQ727gqfxVLjuLr2Tu1yK_3GUE0b8

 

Co-signed by Margaret Mar and Denise Spreag [#MEActionUK]

On behalf of Forward ME

 

Who is Forward ME ? Are there doctors in that group?

I am very pleased about this statement. A breath of fresh air.

 

Well done! I think it will be especially helpful to those who do not know much about the surgeries!

 

You can view the signees by clicking 'download statement'.

 

Interesting to see that there are representatives of #MEAction UK on that list.

 

From the statement:

Many ME patients are being diagnosed with a co-morbid spinal pathology (CCI) and believe themselves to be following the recommendations of suitably qualified doctors (the small group of neurosurgeons we’re all familiar with). Improvement after treatment is attributed to their having addressed a spinal issue rather than it having helped their ME.

This is the central issue in my view—not spinal surgery for ME, which Jeff Wood himself denounced in his recent healthrising blog, but ME patients being diagnosed with and treated for CCI—and I think this statement doesn’t address it head on. I‘m still very pleased with it though of course .

 

You can leave a comment here on Facebook. I think this post deserves it!

 

For clarity:

Forward-ME is an informal group assembled by the Countess of Mar in 2008. Membership of the group is by invitation of the Countess of Mar.

Its linked associates and organisations are:

• Countess of Mar (Chairman)
  
  
• Carol Monaghan (MP) Vice Chairman
  
  
• Dr Nigel Speight
  
  
• Dr William Weir
  
  
• Dr Nina Muirhead

• ME Association www.MEAssociation.org.uk
• ME Research UK www.meresearch.org.uk
• Action for ME www.actionforme.org.uk
• The Young ME Sufferers Trust www.tymestrust.org
• reMemberCFS www.remembercfs.org.uk
• Blue Ribbon for awareness of ME www.Brame.org
• Neurological Alliance www.neural.org.uk
• ME Trust www.metrust.org.uk
• 25% ME Group www.25megroup.org/
• #MEAction www.meaction.net

The position statement was co-signed by Margaret Mar and Denise Spreag (#MEAction UK) and supported by reps of the organisations listed below and clinicians and other professionals associated with these organisations:

 

What is the difference between signing and supporting, in this context?

 

Unclear, but one possibility is that the text of this position statement may have been co-athored by the Countess of Mar and Denise Breag, on behalf of Forward-ME and the other organisations and individuals who have been approached to put their names to this statement.

 

Nice to see MEaction U.K. sign this

 

If it is the case that CCI surgery is NOT for ME (which makes sense) than I'm wondering how this plays out for people. Did they not have ME to begin with? Or do they still have ME in which case how are they differentiating the symptoms of the two. I imagine that there is not complete overlap of symptoms so which symptoms resolve and which symptoms are left?

I see this as a relevant bit of info for clarification.

 

I guess the only study that provides some answers is the Henderson study on EDS?

 

As informal groups go, this is a pretty good one. Better than some formal groups...

 

I am not sure it provides any answers. If I remember rightly it is a retrospective review without any controls. That just tells us nothing.

 

I've been wondering about this. How would you be able to placebo control for this surgery?