Beyond Bones - relevance of variants of connective tissue (Hypermobility) to Fibromyalgia, ME/CFS - Eccles et al Feb 2020

[Dolphin]

From: Dr. Marc-Alexander Fluks

Source: Sussex & Kent ME/CFS Society
Date: January 23, 2021
URL: http://www.measussex.org.uk


Sussex based research studies
-----------------------------

Research carried out by the Brighton & Sussex University Hospitals NHS
Trust and the Brighton & Sussex Medical School that members of the
Sussex & Kent ME/CFS Society participated in have shown interesting
findings which will increase the biomedical understanding of ME/CFS and
Fibromyalgia that could help management strategies in the future.

Dr Jessica Eccles et al. have now had two papers published in the
General medical journal Clinical Medicine about ME/CFS and FM.

The challenges of chronic pain and fatigue - 'In this review, we explore
the challenges of chronic pain and fatigue in clinical practice. Both
pain and fatigue are common, troubling and frequently overlapping
symptoms, and we describe both the clinical burden and the 'clinical
problem'. We explore commonly associated symptoms and possible
pathological associations, including variant connective tissue (joint
hypermobility), small fibre neuropathy, mast cell activation,
dysregulated inflammatory and interoceptive processes, which may inform
treatment targets. We suggest a multidisciplinary management approach.'

Beyond bones: The relevance of variants of connective tissue
(hypermobility) to fibromyalgia, ME/CFS and controversies surrounding
diagnostics classification: an observational study - conclusion
'Symptomatic hypermobility is particularly relevant to fibromyalgia and
ME/CFS, and our findings highlight high rates of mis-/underdiagnosis.
These poorly understood conditions have a considerable impact on quality
of life and our observations have implications for diagnosis and
treatment targets.'

PhD student, Marisa Amato Says: 'One of the most important things I've
taken on board is the importance of listening to patients. I have felt
privileged to hear their stories. I sincerely hope the work we are doing
will have a real impact on patient experience in the future, by
enhancing scientific and public understanding of ME/CFS'
https://www.rcpjournals.org/content/clinmedicine/21/1

 

[Milo]

I am reading the paper. This made me stop reading.

Patients and public were involved in the promotion of the study through local support groups for patients living with fibromyalgia and ME/CFS

Selection bias? A group of patients who were engaged in design of the study went back to their community to let them know there was a study on hypermobility and ME and or FM.

if the recruitment was done on successive patients presenting in a program, self-selection would not be a problem. But it is right in your face.

 

[Jonathan Edwards]

Selection bias? A group of patients who were engaged in design of the study went back to their community to let them know there was a study on hypermobility and ME and or FM.

It is a bit like Michael Sharpe saying that they changed the definition of recovery to get results more in keeping with what they expected.

It would be hard to make more basic errors even if you tried.

 

[Milo]

It would be hard to make more basic errors even if you tried

If the numbers look too good to be true, well maybe they are. Then you see zebra everywhere, and you forget that you are in the zebra exhibit of the safari park and you fail to see people wearing zebra costumes gallivanting in said exhibit

 

[ME/CFS Skeptic]

Had another look at this paper which says:

Two (8%) of healthy controls met 2017 hEDS criteria, compared with 11 (18%) of the patients

The authors do not report it but using a chi square test, this difference was not statistically significant (X-squared = 0.53414, df = 1, p-value = 0.4649). Also note how high the prevalence of hEDS is (8%) compared to the often cited figure for hEDS of 1/5000 (0.02%). It's 400 times higher!

Similarly here:

Seven (29%) healthy controls had generalised joint laxity as determined by Beighton score of four or more out of nine, compared with 29 (46%) in the patient group.

This difference was also not statistically significant (X-squared = 1.4019, df = 1, p-value = 0.2364).

The Brighton criteria showed a significant difference (37% versus 81%, p= 0.001) but that is likely because arthralgia plays an important role in meeting these criteria, hence why 81% of patients had it.