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Ehlers-Danlos Syndrome: Immunologic contrasts and connective tissue comparisons, Islam et al, 2021
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Jonathan Edwards
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Ehlers-Danlos Syndrome: Immunologic contrasts and connective tissue comparisons
That looks like quite a good review.
What is odd is the title - and also the journal.
There is essentially nothing about immunology - because there isn't any. I wonder if the journal editor commissioned this without realising it had nothing to do with the journal's topic.
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Jonathan Edwards
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
As far as I can see it is pretty sceptical about anything beyond the well documented features of the genetic defects.
Pardon me. I meant chronic fatigue, not CFS/ME per se. They provide a differential diagnostic given chronic fatigue. My point was that even if you already have a CFS/ME diagnosis, it doesn't mean that you don't have a co-morbidity like this. It's just a matter of definition if you exclude CFS diagnosis after such a diagnosis. As long as this differential diagnosis isn't specifically listed for differential diagnosis in the CFS guidelines, just as many differential diagnoses, you can not assume that there is no EDS subgroup in the overall CFS-diagnosed patient group.
Think this through for other diseases as well; who knows what ratio post-viral CFS could constitute if this bias is removed. This is why I always point out the importance of identifying subgroups in CFS studies to reach significant numbers. This not only applies to suspected/indicated co-morbidities (calling it co-morbidity assuming that there still is the CFS diagnosis), but also to PEM phases, CFS symptom classification with severities.
By the way, I'm aware that differential-/co-diagnosis ratios are not bidirectional. But there have been studies showing it from the ME perspective as well and how great co-morbidities can amount.
Think this through for other diseases as well; who knows what ratio post-viral CFS could constitute if this bias is removed. This is why I always point out the importance of identifying subgroups in CFS studies to reach significant numbers. This not only applies to suspected/indicated co-morbidities (calling it co-morbidity assuming that there still is the CFS diagnosis), but also to PEM phases, CFS symptom classification with severities.
By the way, I'm aware that differential-/co-diagnosis ratios are not bidirectional. But there have been studies showing it from the ME perspective as well and how great co-morbidities can amount.
Jonathan Edwards
Senior Member (Voting Rights)
If you read the threads here @mat you will see that some of us having been thinking this through for about five years. From my perspective the conclusion is that EDS has nothing to do with ME/CFS at all and probably nothing to do with chronic fatigue.
You seem to be raising the old chestnut that people with ME/CFS might have undiagnosed EDS. I think this particular paper tries quite hard to ensure it is not giving that message.
A differential diagnosis of chronic fatigue in the context of EDS basically means that if a diagnosis of EDS is on the table for someone then it is worth considering that they may have chronic fatigue instead. Not the other way around, as you say. That seems to me fairly sensible since large numbers of people with chronic fatigue and probably with ME/CFS get told they have EDS by physicians who should know better. To the extent that if I remember rightly the local genetics service deliberately points out that it does not want to see people diagnosed with 'hEDS'. I suspect that many for many geneticists most referrals for 'EDS' are actually people with fatigue.
That has absolutely nothing to do with 'subsets' of ME/CFS or co-morbidities. Most of the studies from the ME perspective have been rubbish - apart from the population based ones that tend to show no particular associations.
Yes - you keep saying that and we're not always on the same page regarding what is shortcoming (or rubbish) and what has valid information despite its weaknesses. I often see preemptive suggestions in the discussions and undeclared limitations based on implicit assumptions in the study designs. Yet, you can make your own conclusions given the results and data. Results are the one thing I have trust that the majority do publish it correctly.
I'm new in this community and the EDS topic cross-reference actually is new to me as well. I'm aware that I may raise questions that have already been discussed in old threads. Please have patience with me. I can not read all the old discussions but I try to read old threads of specific studies if they are mentioned and/or referenced as such in a new post.
Jonathan Edwards
Senior Member (Voting Rights)
I am not sure I understand what you mean @mat but I think I disagree. Results are what people choose to publish often after massively distorting reality by the way they collect the results. Bias is ubiquitous in science. The first thing a PhD student has to learn is how many ways they bias their results without thinking. Which is why we have these complicated procedures for eliminating bias. You cannot just look at results and take them at face value. The studies by Rowe, Knoop and Bragee are examples of why not.
I have all the patience in the world but I would like to see the ME community well informed and strong as a result. What everyone on the forum has learnt, including myself, is that we need to be careful to make sure we can justify statements. I appreciate that that also applies to statements about unreliabilities in studies but I have covered the basis for those before and I want to avoid repeating lengthy explanations too often.
The problem of unreliability in ME research is illustrated by the fact that after about 40 years of work virtually none of the so-called positive findings have turned out to be reliably reproducible. One of the main reasons for emphasising the problem is to encourage people not to invest in research that is going nowhere and to call for better quality. Much of the ME research community has got into bad habits. Fluge and Mella got drawn into ME research and because, being oncologists, they knew all about how to research carefully, they showed up the weaknesses in the ME field, including the therapy trials.
I set the bar high, maybe, but I think it pays off if we do that. As I have said before, I think S4ME is a remarkable example of what can be achieved with rigorous scientific debate. It is streets ahead of most academic venues for debate. I think the ME community should be proud of that - it will pay dividends both for ME and the wider medical research environment.
Suffolkres
Senior Member (Voting Rights)
https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full?
Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
'Hypermobility was identified in 115 (50%) participants. MRI of the brain was performed on 205 participants of whom 112 (55%) had an increased ONSD and 171 (83%) had signs of possible IH, including 65 (32%) who had values indicating more severe states of IH.'.....
'At the request of the Stockholm Region County Council, we started an ME/CFS specialty clinic in 2017 aimed at ME/CFS diagnosis, treatment, and research. Using an extensive neurological protocol, we found that patients frequently had clinical findings including hypermobility and central nervous system (CNS) pathologies, including magnetic resonance imaging (MRI) findings in the brain and the craniocervical region. Thus, we hypothesize that hypermobility and craniocervical obstruction are overrepresented in patients with ME/CFS and that a large portion of these patients may have a degree of intracranial hypertension (IH), which may explain many of the ME/CFS symptoms. To our knowledge, this is the first study of ME/CFS focusing on a possible mechanical pathophysiology.'....
...Conclusions
In this relatively large novel study on symptoms and signs of IH, hypermobility and craniocervical obstructions in patients with ME/CFS we found to have a significant overrepresentation in our cohort compared to the general population. These signs might explain some of the major clinical symptoms and signs of ME/CFS, such as brain fog, fatigue, orthostatic intolerance, PEM, preference for the supine position, widespread pain, CNS neuroinflammation, immunological reactivity, and autoimmunity mechanisms. If our findings are further validated, a paradigm shift in the diagnostic methods and treatments for patients with ME/CFS may occur..'
Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
'Hypermobility was identified in 115 (50%) participants. MRI of the brain was performed on 205 participants of whom 112 (55%) had an increased ONSD and 171 (83%) had signs of possible IH, including 65 (32%) who had values indicating more severe states of IH.'.....
'At the request of the Stockholm Region County Council, we started an ME/CFS specialty clinic in 2017 aimed at ME/CFS diagnosis, treatment, and research. Using an extensive neurological protocol, we found that patients frequently had clinical findings including hypermobility and central nervous system (CNS) pathologies, including magnetic resonance imaging (MRI) findings in the brain and the craniocervical region. Thus, we hypothesize that hypermobility and craniocervical obstruction are overrepresented in patients with ME/CFS and that a large portion of these patients may have a degree of intracranial hypertension (IH), which may explain many of the ME/CFS symptoms. To our knowledge, this is the first study of ME/CFS focusing on a possible mechanical pathophysiology.'....
...Conclusions
In this relatively large novel study on symptoms and signs of IH, hypermobility and craniocervical obstructions in patients with ME/CFS we found to have a significant overrepresentation in our cohort compared to the general population. These signs might explain some of the major clinical symptoms and signs of ME/CFS, such as brain fog, fatigue, orthostatic intolerance, PEM, preference for the supine position, widespread pain, CNS neuroinflammation, immunological reactivity, and autoimmunity mechanisms. If our findings are further validated, a paradigm shift in the diagnostic methods and treatments for patients with ME/CFS may occur..'
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Jonathan Edwards
Senior Member (Voting Rights)
Yes, we have had discussions about the Bragee paper. It really doesn't help.
Apart from anything, looking at the figures quoted above there seem to be altogether too many explanations all in the same people. If you have four simultaneous explanations instead of one the likelihood that any of them is meaningful becomes a bit dubious!