Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

meanwhile Per Fink has been conducting a similar exercise with BDS and trying to get a WHO classification.

and I'm guessing there is probably a Venn diagram somewhere showing how all the 'conditions' overlap in terms of symptoms.
I don't think anyone would agree it is 'helpful'.
I think it might have been Nancy Klimas who said what is needed in ME research is more stratification not conflation.

 

And that is a COMPLETELY different thing. Jen Brea and Per Fink very clearly have completely different aims.

 

I strongly disagree. IMHO we should be able to discuss all science and diagnoses should form no exception to this. We should be able to criticize it if we think it doesn't make any sense. As long as one is not questioning an individuals' diagnosis (You don't have... X) but the scientific concept, I don't see how that would be rightly considered offensive.

If someone, on another forum or here on S4ME, were to make the cases that ME/CFS is a nonsense diagnosis and he/she has some knowledge and good arguments for that position, I'd be interested in hearing their thoughts. Perhaps he/she is right. Or perhaps it would help us understand our own position and how outsiders view the concept of ME/CFS.

This has already been mentioned elsewhere on the forum, but part of the skepticism towards concepts such as hEDS, MCAS, POTS, chronic lyme etc. is that these diagnoses are not merely a description of symptoms or a clinical course. They put forward a biological mechanism as relevant to patients' medical condition namely, joint hypermobility, mast cells, tachycardia, and persistent Borrelia infection without there being strong evidence for that connection. So these diagnoses carry a scientific hypothesis within them. And it's often impossible to challenge that hypothesis without questioning the diagnostic entity itself. That's why I consider it important not to see statements on diagnoses being invalid as a form of bullying.

That said, it would be good to focus on the arguments regarding the validity of a diagnostic entity instead of claiming it's simply nonsense and that patients believing in it are being duped etc.

 

Thread here
https://www.s4me.info/threads/we-sh...-other-patients’-diagnoses-are-invalid.10495/

 

I was very glad to see Cat Eye tweeting with such clarity on this issue.

ME occupies a fragile space in medicine, as it is, and many of us ill since 80s simply do not have these comorbidities and feel the lumping of these other illnesses together with ME is detrimental, and unhelpfully broadening criteria.

Of course, clinically established comorbidities should be explored, but those of us who have had ME for decades want ME to be the focus of research, when we have had such paucity of research to begin with.

Was interesting to see Dr Emma Reinhold, a UK GP whose expertise is in EDS, tweet that those who are older w ME dx, are less likely to have these comorbidities. I know older doesn’t necessarily mean have had ME for decades but those of us who have been ill since 80s are definitely older. I wonder why comorbidities seen less in us? ME criteria used in 80s?

For many of those of us with Ramsay ME - gross fatiguability (now referred to as PEM), orthostatic intolerance and myalgia are part and parcel of ME. But PEM now is bandied around on Twitter as if it has lost its meaning.

 

same thing happened with the term 'brainfog'; now just about everyone uses it.
eta: not as a result of twitter tho'

 

@Michiel Tack

No, hEDS doesn’t propose hypermobility as an explanation for anything (except, like, pain and subluxation). Read some papers that I posted on other threads. I can’t explain again every time this comes up.

All form of EDS have some kind of hypermobility, including vascular and classical. Hypermobility type is kind of a nomenclature accident like chronic fatigue syndrome.

I can’t be an expert in everything, but if your EDS information is no better than this I would check your sources for the other conditions.

However, I am not sure a posited causation is that big of a failing. Lots of diseases have had a mistaken posited cause. If the signs and symptoms are strongly described and disctinct enough to separate from other things, I wouldn’t worry about that when deciding if the diagnosis itself is legitimate (whether to keep funding research if it’s not getting results, yes, but not relevant to whether the signs and symptoms run closely enough together that it probably indicates some related causation amongst patients.)

Edit; I apologize for being ungracious. I should really find the posts myself and paste them in. Hard to copy and paste on a tablet, however.

 

On a point of information re: mast cells, in case it helps, ME CFIDS of the kind I have is widely regarded as being associated with TH2 shift which does exacerbate allergic type responses and could apply to mast cell activity. It would be wrong of me to assume we both had exactly the same condition so I cannot give you any advice at all but I have written a bit about TH2 shift from my own perspective elsewhere on the BB so I will link that to save me writing it out again, in case it helps you or anyone else reading this.

https://www.s4me.info/threads/whats...s-odors-and-chemicals.8402/page-2#post-178341

 

With all the respect, but I didn't mean to suggest that hypermobility is presented as the cause of hEDS symptoms, no more than postural orthostatic tachycardia as the cause of the symptoms POTS patients experience. Want I meant is that these signs are interpreted as relevant to the patients' medical condition and often as indicative of the underlying biological mechanism. That's the hypothesis I meant and which I think we should be able to criticize. My understanding is that both POT and hypermobility are common and occur in people who are not symptomatic.

 

Thanks for your reply. I'll have a look I did deliberately mention mast cells to see what would come up in discussions

In my own case there doesn't appear to be a correlation between eczema symptoms & the ME ones. Diet, stress levels and the weather (sweating amplifies eczema symptoms) are the main factors.

Most people with ME don't seem to have eczema. Of course that doesn't rule out mast cells from playing a role in what is known as ME/CFS.

 

idk if this is going to be useful:

what definition of comorbidity are we using? is everybody on the same page?

i find that it is often useful to abandon a word and say
what you mean in the more cumbersome but less ambiguous base
concepts. or else say "by the definition in (link here)".

in the case of comorbidity, it might be things like direct
causation, associated risk factors, heterogeneity,
independence, if those are agreed and defined and
understood. they are at least defined in
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2713155/ which
at least says the
word is ambiguous. or maybe:

1) "Co-existing but probably not part of the disease"
2) “Any distinct additional entity that has existed or may
occur during the clinical course of a patient who has the
index disease under study” (a quote)
3) "A correlated probable part of the disease"

maybe everybody is on the same page. in which case, never
mind.

although, we seem to maybe be using the term for, not fully
acknowledged and well-understood entities, but also
(potentially):

1) some with controversy or persecution (whether earned or
misopathic)?
2) and some with many symptoms in many body systems, and
overlap with e.g. meicc and also many members on forum?
3) and overlap in existence epidemiology, whether published,
grey literature, or anecdotally on this forum?

maybe just me, but maybe more clarity could be possible?

===

i must say that it is stressful for me (definition:
reading a signle post can cause a crash for days) to try to pop into
threads like this, in which:

1) i'm vaguely aware that there is controversy
2) which has potentially reached the level of exiled/self-exiled members?
3) and therefore is /potentially/ a sign of a /potentially/
exploding forum?
4) which is stressful because we need more than one adequate
forum in case one explodes or becomes intolerable to good
community members
5) and /potentially/ a sign of a regressing community (dunno)
6) but for health reasons i cannot possibly know the background
7) which includes stuff outside the forum and mountains of posts in multiple threads
8) and there is potential tendentiousness on certain topics (dunno)
9) potentially including even proxy or injected tendentiousness from outside the m.e. world (dunno)
10) and the background seems to assume every reader has followed the discussion (note: not saying that is always unjustified)
11) and parts of it are alluded to elliptically sometimes
12) and includes stuff outside the forum which i /never/
follow (for health reasons i cannot even read tweets
that are posted here and text does not show because i have
to turn off js but that is a topic for another time -- i
really wish all potentially stressful images such as of perpetrators would
use spoiler tags so teh more severe members can stay)
13) WITH 100,012.3 TOPICS DISCUSSED AT ONCE (validity,
alliances, overlaps, a member, some tweet, disease
definitions, peaches) in which maybe they don't always have to be combined? (dunno)

i don't ahve a solution, but there you have it. just a guy
complaining. ignore it.

there is yeoman's work by activists and scientists behind
the scenes. i view that as high priority.

so i guess my remarks on clarity are aimed at the forum supporting that if possible.

 

Just to note that the 2017 Pediatric Primer lists both EDS & MCAS as overlapping conditions. Authors include Peter Rowe, Katherine Rowe, & Nigel Speight. https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

I agree that we lack formal, published evidence demonstrating overlap but respected ME clinical experts have said these can be comorbid, based on their clinical experience. And not just in kids but adults as well

 

With all due respect 'based on clinical experience' is something physicians should have given up saying in the 1970s in this sort of situation. As soon as there is a story about that things are linked people with both conditions will pitch up at a greater frequency at the tertiary centre clinics. Being comorbid presumably just means having evidence of both. If the primary care people referring patients in hear you have an interest in both you get those patients. Rowe's original paper on EDS looks less and less meaningful every time I look at it. I have yet to be convinced that anybody really knows what they mean by MCAS. It has a set of criteria but they are vague enough to be pretty useless. The relevant literature is more or less non existent.

I am pretty sure nobody has made the effort to collect decent population based data - except of course for the recent paper that suggests that there is no link between any of these things.

'Respected ME experts' say all sorts of daft things - including that it is biopsychosocial. I respect colleagues who gather evidence in a reliable fashion and limit what they say to what they actually know.

 

Can you point me to that paper?

Assuming you mean BPS as branded by PACE and related studies, I have never heard any "respected ME expert" state that ME is a biopsychosocial disorder

Regarding MCAS - here's one source from the American Academy of Allergy, Asthma & Immunology.
https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas

 

I don't have a link. it was discussed on a thread here about a month ago.

Simon Wessely and Peter White are highly respected ME experts - vast numbers of people respect them I am pretty sure. This is the whole problem - the argument from authority. It doesn't wash. We need to do better than that.

Again, this is just a blurb from an association of physicians most of whom are chiefly concerned with paying their bills and getting the kids through school. We need something better than that. We need reliable evidence. My impression from that site is that it takes mast cell activation syndrome just to mean what we have always called allergy, but when the allergen is not known - which is a lot of the time. Whenever I look up MCAS nearly all the papers seem to be written by the same guy whose name begins with A. That makes me sceptical.

 

Might it be this paper: The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS)?

It was briefly discussed in this thread: https://www.s4me.info/threads/eds-h...link-if-any-to-me-cfs.9669/page-3#post-181517

Edited to correct link.

 

@Hutan - yes, I've seen that as well and completely agree with your concern.