The Presentation of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Influenced by the Presence or Absence of Joint Hypermobility

[nerd]

Authors: Sarah K Vogel, Isabelle R Primavera, Colleen L Marden, Samantha E Jasion, Erica M Cranston, Marissa A K Flaherty, Richard L Violand, Peter C Rowe
Published: September 16, 2021
PMID: 34537220
doi: 10.1016/j.jpeds.2021.09.014

Abstract

Objective: To examine demographic and clinical characteristics of individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with and without joint hypermobility We hypothesized that JH+ patients would have an earlier onset of ME/CFS symptoms as well as increased severity, greater number of co-morbid conditions, and lower health related quality of life.

Study design: From an observational cohort study of 55 individuals meeting the Fukuda criteria for ME/CFS, we compared groups using a Beighton score cut-off of 4 or higher to indicate JH. Chart data were collected to examine the age and type of onset of ME/CFS, and the presence of comorbid conditions. The impact on quality of life was assessed through questionnaires that included the Peds QL, Functional Disability Inventory, Peds QL Multidimensional Fatigue Scale, and Anxiety Subscale of the Symptom Checklist 90.

Results: There was no significant difference between groups in mean (SD) age at onset of ME/CFS (13.3 [3.3] years vs 13.3 [2.3] years; P = .92), sex, frequency, and severity of ME/CFS symptoms, orthostatic intolerance symptoms, or comorbid conditions. There was no significant difference between groups in measures of health-related quality of life using a Beighton score cut-off of 4 or a cut-off of 5 to define joint hypermobility.

Conclusions: Despite being a risk factor for the development of ME/CFS, JH as defined in this study was not associated with other clinical characteristics of the illness.

 

[Martin aka paused||M.E.]

55 individuals meeting the Fukuda criteria for ME/CFS

Man, how do these criteria survive?

 

[Pyrrhus]

Thanks for posting!

For those of you who may not be familiar with statistical epidemiology:

• If something is considered a "risk factor" for something else, it just means that the two things tend to be correlated. It does not mean that one thing is a cause of or contributor to another thing, or that one thing is a result of or influenced by another thing, or that both things are actually the result of a third thing - it just means that the two things tend to be correlated, nothing else.
• Examples: Being partly bald is a risk factor for hair loss. But that doesn't mean that baldness causes hair loss. Being alive is a risk factor for Alzheimers disease. But that doesn't mean that life causes Alzheimers disease, it merely means that Alzheimers disease is less likely when you're dead.

I haven't read the whole paper, but for anyone who has:

• Were hypermobile subjects required to demonstrate hypermobility before falling ill with ME? (I suspect not.)

If not, and if these results were to hold with a more appropriate set of diagnostic criteria, it might indicate that collagen loss might be one of the possible symptoms of ME, but not a predisposing factor.

 

[Martin aka paused||M.E.]

collagen loss might be one of the possible symptoms of ME, but not a predisposing factor.

Thank you that's exactly what I argued - besides Fukuda which makes the study more or less useless - on discord. Pathogens can weaken ligaments just like toxins do.

 

[Oliver3]

Thank you that's exactly what I argued - besides Fukuda which makes the study more or less useless - on discord. Pathogens can weaken ligaments just like toxins do.

I have to disagree. There is something wrong in the collagen or tissue structure from birth!
Something that allows pathogens and autoimmunity more easily.

 

[Martin aka paused||M.E.]

I have to disagree. There is something wrong in the collagen or tissue structure from birth!
Something that allows pathogens and autoimmunity more easily.

Everyone can have their opinion.

 

[Rufous McKinney]

Man, how do these criteria survive?

why why why do they keep using these lousy criteria?

 

[Martin aka paused||M.E.]

why why why do they keep using these lousy criteria?

Really annoying !! That makes every study useless

 

[Rufous McKinney]

Really annoying !! That makes every study useless

what drives New Studies using these outdated criteria?

This seems like we have this ongoing issue and why is not getting addressed by the researchers?

I would put that simple question on the Ask Ron Davis Thread, but it seems that has failed to generate any more answers.

A pile of researchers just had big zoom Working Group.

Why are research studies still using Fukuda and WHAT can be done to get that to change?

 

[Martin aka paused||M.E.]

Why are research studies still using Fukuda and WHAT can be done to get that to change?

Head meets wall: I don’t know what’s going on. It’s so clearly outdated and there are reasons why there are CCC and ICC but some researchers don’t seem to acknowledge them.

 

[Oliver3]

Everyone can have their opinion.

Sure. Just saying Martin

 

[nerd]

what drives New Studies using these outdated criteria?

It's quick and simple, doesn't require an elaborate questionnaire.

 

[Pyrrhus]

why why why do they keep using these lousy criteria?

In this case, they had to review old medical records from people who were diagnosed many years ago, and that might be a factor.

 

[Hufsamor]

There is something wrong in the collagen or tissue structure from birth!.

Maybe for some and not for others?
Both my brother and I was hyper mobile even as kids, and we both developed me/ cfs as adults.

 

[Rufous McKinney]

they had to review old medical records from people who were diagnosed many years ago, and that might be a factor.

Well I expect to see that in these review type articles, we are stuck there.

Can't you confirm that all 55 ME patients meet ICC criteria? I don' t quite understand it, in this case.

We have an illness that is often not diagnosed, famously.

Is my SEID diagnosis of any value? I would argue its not.

It was just my doctors opinion, at minute 54, of a 55 minute appointment.

 

[Oliver3]

Maybe for some and not for others?
Both my brother and I was hyper mobile even as kids, and we both developed me/ cfs as adults.

Yes that's a possibility I guess. But as it runs in families through generations , there's got to be a vulnerability. I don't think the pathogen is ground zero so to speak but the first time the structural weakness is a player when it meets Epstein Barr or whatever

 

[Pyrrhus]

If something is considered a "risk factor" for something else, it just means that the two things tend to be correlated. It does not mean that one thing is a cause of or contributor to another thing, or that one thing is a result of or influenced by another thing, or that both things are actually the result of a third thing - it just means that the two things tend to be correlated, nothing else.

One of the worst examples of people misunderstanding the term "risk factor" is when you see news headlines that say things like "taking ibuprofen/paracetamol during pregnancy is a risk factor for birth defects!"

People then are erroneously led to believe that ibuprofen/paracetamol might cause or contribute to birth defects. In fact, taking ibuprofen/paracetamol is a very strong risk factor for being ill, as people who are ill are much more likely to consume ibuprofen/paracetamol than people who are healthy. So, the news headline should simply read "giving birth to someone with birth defects is correlated with signs of having been ill during pregnancy".

The root of the confusion is the fact that epidemiology can use the term "relative risk" as a synonym for "conditional probability". So, whereas most people would say "if you take ibuprofen/paracetamol then you're probably ill", epidemiologists might say "taking ibuprofen/paracetamol increases the relative risk of being ill."

 

[Alvin2]

Alzheimers disease is less likely when you're dead

I love this

This seems like we have this ongoing issue and why is not getting addressed by the researchers?

I had the same thought, this is a stupid but easily fixable problem unlike everything else in ME.

I would put that simple question on the Ask Ron Davis Thread, but it seems that has failed to generate any more answers.

+1