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Twitter summary: 1) New blog post on hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobile spectrum disorder (HSD). https://mecfsskeptic.com/heds-and-hypermobility-spectrum-disorder/ 2) Epidemiological studies show no clear relationship between hypermobility and symptoms such as chronic...

A new blog post on the problems with hEDS and hypermobility spectrum disorder. https://mecfsskeptic.com/heds-and-hypermobility-spectrum-disorder/ Epidemiological studies show no clear relationship between hypermobility and widespread pain. This questions the validity of diagnoses such as...

Do not want to divert the discussion too much, but what this truly the case? I got the impression that only the coroner believed this because the physicians involved in her care tried to argue that nothing more could be done (to get themselves off the hook). They seem to hold a psychosomatic...

I don't see it this way. I suspect fibromyalgia is much older than the central sensitisation theory and that many FM researchers do not subscribe to this theory even it is the most popular one. There's also a 'central sensitivity syndrome' diagnosis that is much broader than FM. I think that is...

Thanks very much for this useful paper. I understand correctly, Dr. Souhami’s asked about the justification for differentiating ME/CFS from idiopathic fatigue or other unexplained symptoms. Here are my thoughts. Since very few physicians diagnose ME and other case definition have fatigue as a...

Great. Thanks a lot!

Thanks for checking anyway.

DynaMed is a clinical decision support resource from EBSCO. It provides evidence-based summaries of conditions with recommended actions. It has this guideline on 'Chronic Fatigue Syndrome' which was last updated on 11 December 2023...

It was last updated on: 29 May 2024. Is anyone able to help me get the most recent version of the BMJ best practice on Myalgic encephalomyelitis (Chronic fatigue syndrome)? https://bestpractice.bmj.com/topics/en-gb/277 Many thanks in advance!

This seems to be the website: https://dsqscreen.com/

In the second part of the paper they looked at whether several conditions including chronic fatigue increased the risk of Long Covid. Unfortunately, they used the term 'chronic fatigue/myalgic encephalitis' which does not give a lot of confidence that they defined ME/CFS accurately. Table 1...

A previous Long Covid GWAS (with only 6,450 cases) highlighted FOXP4 with with one SNP having an OR of 1.63 [1.40-1.89] but this wasn't replicated in this 23andME GWAS (p=0.57). They say that the previous GWAS found the same effect sizes for the genes they identified but that these were not...

Had another look at the Eccles study and the hypermobility was based on self-report: Non-recovery was also based on self-report so perhaps the association found may simply reflect that some people tend to report more problems than others.

Had another look at this paper which says: 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...

I'll try to rephrase. Most researchers suspect there are more EDS types or similar heritable connective tissue disorders that have not yet been explained on a molecular basis. To find these, it would be useful to have a selection tool or category for patients who have abnormal clinical signs...

The idea was that people who have several unusual signs might be a better target to search for new gene defects. One could give points based on how unusual or specific a feature is, but the adding up of signs wasn't the main point I wanted to make. I was mostly concerned with people who have...

That these people have a lot of clinical signs that physicians associate with known connective tissue diseases. If researchers wanted to search for new EDS types, new mutations causing a connective tissue disease, wouldn't it be useful to have a group of suspected cases to test your hypothesis...

Thinking some more about the hEDS diagnosis. The main problem is that it attributes a lot of unexplained health complaints to (a supposedly rare) connective tissue disorder without sufficient evidence to back this up. On the other hand, there are likely a lot of other EDS or other genetic...

Sounds interesting but the perfect separation in such a large sample almost seems like to good to be true. Especially considering that pain and hypermobility form a continuum with HSD and hEDS using an arbitrary cutoff. The paper writes:

Would be interested in hearing what other think. Several of the 2A features seem quite subjective. A physician who believes in connective tissue disease being the underlying cause of many unexplained symptoms might be able to diagnose a lot of patients with hEDS using these criteria. Soft...