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

I understand and appreciate the issue of conflating diagnoses but we are facing a systemic problem that affects way more than us and we will not fix that system all by ourselves. I follow a lot of people with other non-controversial health issues on Twitter and the problems we face are all over the damn place, top to bottom and baked into the culture of medicine. Chronic pain is the canary in the coal mine and the current approach is to manage it the same way we are: with conversion therapy BS and magical thinking. The failure is expanding and we can't counter it as a discriminated patient population.

It's difficult to broaden the solution without diluting in a disease where diagnostic criteria are a particularly point of controversy but, still, we will not beat a failed system into submission by our lone selves. Not by a long shot. The assumptions that sink us are not even particular to us, they rear their ugly heads constantly about every damn health problem that is not textbook perfect and easily and readily visible.

It's important to distinguish but the fundamental issue here is the BS of medically unexplained symptoms, which is anything and everything that is not easy to attribute to a known disease and readily testable. This stuff affects hundreds of millions and is the exact same underlying distortion where a problem that can't be seen is immediately dismissed as imaginary, no evidence required, no due process demanded and no ability to appeal or object.

There is little difference between the dismissal of an entire disease such as ME as there is about belittling and dismissing chronic pain. The prescription is even the same: mindfully sing kumbaya to it and just stop complaining about it, it's your thinking about it that makes it so bad. Even though no one denies that pain exists, as they deny our illness does. It's not being able to see it that breaks everything. ME would never have been denied this way if it had something like a minor rash or discoloration or anything that would be visible along with the rest of the disease. Chronic pain is belittled exactly for this reason: out of sight, out of mind. On this, medicine has not progressed one iota.

All I read from Jennifer's efforts is that it's about differential diagnoses and co-morbidities that face the same broken system, not that they are different explanations for the same thing. Any concerns about this leading to conflating them are irrelevant since this is exactly what MUS is, this problem is already a thing used in practice, thought in medical schools and in the process of being enthusiastically expanded without a thought about consequences because it's a fake solution that systematically hides and buries failure. It's literally too good to be true but dammit does it feel good to pretend to do something and the culture of medicine is unfortunately geared this way.

It's pretty obvious that the solution that will develop over time will be a multidisciplinary approach that specializes precisely in differentiating those different, though superficially similar to the untrained eye, problems. If the culture remains the same, I'm not even certain anymore that a clear biomarker would make that much of a difference, there's just too much baggage and contempt for us. There will be too many people motivated to sabotage things for us and fighting us the whole way because they depend on the broken system to promote their pet ideologies.
 
rvallee said:
this is exactly what MUS is
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precisely, so why feed into it or in effect do the same?
rvallee said:
I'm not even certain anymore that a clear biomarker would make that much of a difference
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It did make a difference to MS sufferers who were on the 'target list' see
The old industrial injuries were giving way to illnesses with
no clear biological markers - Myalgic Encephalomyelitis (ME) or Chronic Fatigue
Syndrome (CFS), Fibromyalgia, Chronic Pain, Multiple Sclerosis, Lyme Disease.
In the early 1990s the new kinds of claims began to rise just as interest rates fell:
profits were threatened. Unum’s 1995 ‘Chronic Fatigue Syndrome Management
Plan’ sounded the alarm: ’Unum stands to lose millions if we do not move quickly
to address this increasing problem’."
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https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/

But like others, even MS patients struggle to get a diagnosis because of the BPS approach, but at least once they do get diagnosed they are taken seriously by the medical establishment and the general public.
 
Sly Saint said:
precisely, so why feed into it or in effect do the same?
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There is a huge difference between "those people are all sick and we have to figure it out, that will take money so let's put it" and "those people all believe they're sick and we have to convince them otherwise". I don't buy that MUS proponents agree we're sick. They don't. They just pretend and adapt the vocabulary because they can't say it directly but almost every single comment I see in the wild has no such ambiguity, most physicians flat out say we're delusional and in need of an attitude adjustment, no more. The contempt is genuine, we are "others", the same way police officers see petty thugs and strung out junkies.

The real category is diseases beyond our current understanding, in the pre-breakthrough phase. The only solution is research and specialist services, there is simply no other way. There is no actual research in MUS and proponents regularly dismiss all research as a waste of time, even mock it.

It's a category error and it includes a lot of people with otherwise non-controversial health problems. It's the lack of due process, the equivalent of a mock trial that judges someone to be guilty without charge in just a few minutes, no evidence required, no possibility of appeal, oftentimes the "crime" isn't even written down other than a few notes in the file that aren't meant to be seen other than by an attending physician, more as a warning than anything.

Ethics is likely to be the main element of reform, the genuine right to health care, rather than a privilege bestowed capriciously. Until then most of the information is actually buried, leading to absurdities like "no evidence of harm" when there actually have been hundreds of thousands of complaints, they are simply dismissed as invalid, our very existence fully dehumanized, erased. In a sense, we are disenfranchised from the right to health care. All of us, not just those with ME but even people with brain cancer who get mocked by their GP with "what, you think you got brain cancer?".

I just think the solution requires both. Anyway, it's not like I could do anything about it. But I have no problems with a broader coalition that finds common grounds into solving different, though superficially similar to the untrained eye, problems. I find no blurring of the actual conditions, only a common set of circumstances that deliberately blur the distinctions and need to be fixed to put the real problem in focus.
 
I couldn't find the tweet where she advocates having one framework for all poorly understood diseases. IMO we are now just discussing another Twitter user paraphrasing Jen's opinion (the one quoted in above post), which might be incorrect.

I'm pretty sure nobody in the entire ME/CFS patient community advocates for the MUS model. I find the MUS approach so obviously unscientific that it's difficult to understand how such a category ever got accepted anywhere. The MUS hypothesis basically hinges on having a lack of evidence and then building the theory based on the assumption that the current lack of evidence alone is enough to build a model of no "organic" illness (well, actually that's not even a model). This could only ever make sense if medicine was a complete science and assumes that we know everything. The correct scientific response to unknown symptoms being presented would be to say "hm, we don't know exactly what is going on with these patients, but let's continue to investigate". This is how science operates, it builds hypotheses and theories based on the evidence, not based on lack of evidence. MUS is no more evidence based than claiming that all diseases unknown are caused by the devil.

Anyway, I think it's also worth to remember that all current medical diagnoses are categorized by us. Medicine is an applied science and diagnoses and disease categories are not absolute the same way as the laws of physics for example. It could be that we one day found out that ME/CFS and Lyme are ultimately caused by the same disease process, in which case it would no longer be wrong to lump them together to one category.
 
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JES said:
I couldn't find the tweet where she advocates having one framework for all poorly understood diseases. IMO we are now just discussing another Twitter user paraphrasing Jen's opinion
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I don't think she did. She suggested including 'comorbidities' in the scope. That included Ehlers Danlos, mast cell activation and maybe Lyme.

The problem I have is that this is just as unscientific as MUS. There is precious little evidence for EDS or MCAS being 'comorbidities' for ME/CFS. The idea that there is seems to be a meme generated by muddle-headed physicians. If we think being scientific, or perhaps more precisely sticking to evidence, is important then discussion of these conditions seems likely just to mislead more people.

JES said:
Medicine is an applied science and diagnoses and disease categories are not absolute the same way as the laws of physics for example. It could be that we one day found out that ME/CFS and Lyme are ultimately caused by the same disease process, in which case it would no longer be wrong to lump them together to one category.
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That is partly true but remember that some diagnoses, like Lyme, are indeed absolute, in the sense that Lyme specifically means caused by a borrelia species. (EDS means due to a mutation in a connective tissue gene. MCAS means caused by mast cell activation.) We have no indication that ME/CFS as a whole is caused by borrelia. The epidemiology is very much against that. ME/CFS and persistent symptoms after borrelia infection might involve a similar neurological pathway but that would not justify lumping in Lyme, which would not be that pathway but a prior aetiology.

The mechanism of multiple sclerosis is still not really understood. It does not seem sensible for MS information resources to include other not quite understood conditions. MS deserves a resource of its own. As does ME in my view, but it needs to have some quality control.
 
Jonathan Edwards said:
The problem I have is that this is just as unscientific as MUS. There is precious little evidence for EDS or MCAS being 'comorbidities' for ME/CFS. The idea that there is seems to be a meme generated by muddle-headed physicians. If we think being scientific, or perhaps more precisely sticking to evidence, is important then discussion of these conditions seems likely just to mislead more people.
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But does the meme that is generated and hence the diagnoses that people are given (by the muddle-headed-physicians) mean that they do need to be considered together - from the perspective that some people will have been given those diagnoses.
 
I'm not quite sure where I stand on this.

I think we need to test all at least remotely plausible ideas simply because we haven't made much progress.

On the other hand my feeling is that often patients are jumping to conclusions and prematurely forming beliefs on the nature of ME/CFS that could delay real understanding. They don't appreciate that knowledge is not so easily gained.

I think it's possible that there might be a dozen illnesses behind ME/CFS, but I also think it's possible that there might just be one or two very heterogeneous illnesses but several diagnostic labels.
 
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Is not the Lyme definition, in reality, even narrower than "caused by a borellia species". It seems to be "testing positive on the currently available (EDIT and approved) tests for borellia species".

It seems from Bitten that Burgdorfer was infected, but tested negative, and the diagnosis was withheld. (EDIT He is quoted as having said in 1983 "Past experience has shown that patients wit initial Lyme disease manifestations (lesions) do not convert seriologically when treated early with antibiotics".
 
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I also feel that patients often have what are probably comorbidites like as of yet poorly understood gut issues or strange reactions to food. I need to talk about this more when I have the energy.

Or things like constant mild sinus issues. Or weird blood sugar fluctuations. Or this or that. Almost every patient seems to have a couple of these additional problems. Why is that? There has to be some unifying thread in all this.
 
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Wow, that's showbiz!

IMHO we have to be really careful with these "comorbidities" about how we classify them.

For example Lyme is probably producing some kind of CFS, but its likely to be the opposite of CFIDS in relation to the TH1/2 immune system differentiation pathway. i.e. Lyme appears to be accompanied by a TH1 shift.
https://www.ncbi.nlm.nih.gov/pubmed/9551943

CFIDS has been characterised as involving a TH2 shift.
https://www.ncbi.nlm.nih.gov/pubmed/21234277
https://www.ncbi.nlm.nih.gov/pubmed/25824300

So these both produce a poorly understood CFS due to the immune system response, but they are different types of CFS IMHO as one is TH1 shift and the other is TH2 shift, so these should be considered different subtypes of CFS and not be confused with each other.


With EDS (back of envelope type musing) its worth noting that Ron Davis said he has EDS himself and so its possible that this is influencing his research as it relates to his son's condition. I believe I can follow his interest in this in relation to connective tissue because he earlier identified a bottleneck in the metabolic pathway for biotin in his cohort. Using my own history as the only reliable data I have, this biotin dearth chimes with my own experience with cracking finger nails (keratin) since CFIDS onset so I tend to give credence to the idea biotin reduction might be an aspect of CFIDS metabolism and not peculiar to EDS as I dont think I have EDS myself.

While I admit to being out of my depth on EDS and connective tissue metabolism, it strikes me it might be true that biotin blockage would exacerbate connective tissue disease as I have read that biotin deficiency can depress collagen synthesis and that immune activity of the kind relating to TH2 shift can influence this as well.
http://www.vic-japan.gr.jp/vic/106/106e.pdf
https://www.sciencedirect.com/science/article/pii/S0174173X8880013X
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5014664/

Which is why I would construe that it might be possible that an EDS patient with CFIDS would experience additional symptoms compared to a non-EDS patient with CFIDS or an EDS patient without CFIDS or the sum of the parts as it were. i.e. the two conditions could coexist and might interact.

More than that is hard to say. I simply dont know if EDS mutations could predispose people to getting CFIDS but logically speaking, I could not rule it out.

With respect to classifying the conditions, not all people with EDS have CFIDS and vice versa not all people with CFIDS have EDS so it seems most appropriate to consider them distinct conditions which can coexist in individual patients.

If we represented the classification as a Venn diagram, such patients would belong inside the overlap where the two circles representing EDS and CFIDS cases intersect.
 
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there are different levels of advocacy if organisations advocating for Fibromyalgia Lyme EDS etc want to collaborate to highlight issues people with poorly understood illnesses have - access to benefits, ill health pensions, social care etc, and an overall increase in research efforts into possible causes and effective disease modifying treatments that’s great. It just needs some kind of forum for advocates to get together

However in order to get ME addressed there needs to be a focus on research into ME. People with ME need accurate information and appropriate support about ME. On a basic level co morbid conditions may be helped by things that make ME worse. ME specific organisations and advocacy are needed.

On ME pedia well there’s nothing to stop people/organisations setting up a parallel EDS pedia or Fibro or Lyme pedia that can sit alongside it and link between but have Lyme title and contents. If I was a Lyme person I would be confused about going to something called ME pedia for Lyme info. Also could argue if you concentrate effort on getting ME pedia accurate and promote its use other groups will see it as a model and want to do the same approach for their audience.

Definitely should avoi£ being seen to lump everyone in together which is indeed at risk of validating MUS . Ideally groups Need to work together against MUS but what evidence do we have that other groups have understood and taken on board the concerns? And in any event that can be by collaboration rather than subsuming everything into one patient group.
 
My concern is that it is odd to include things like EDS, MCAS, CCI etc in MEPedia, when we so far have no evidence to suggest there is a connection other than the inevitable population overlaps you get with any conditions. There are people with ME who have migraines, asthma, hay fever, male pattern baldness, cancer, ... the list is endless.

I would much prefer MEPedia and ME advocacy focus on ME, and leave the speculation about possible biological connections with other conditions until there is research evidence to support a connection.

For advocacy, I think it could be useful at times to work with other groups, for example on getting proper diagnostic and care services and financial support for people with ill understood conditions. That also includes fighting against the MUS bandwagon.
 
boolybooly said:
I believe I can follow his interest in this in relation to connective tissue because he earlier identified a bottleneck in the metabolic pathway for biotin in his cohort
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This is what RD discovered in his sons case.

"Davis said that his son Whitney showed errors in B-vitamin metabolism, resulting in a very rare deficiency of biotin; this is important, because enzymes in the citric acid cycle are dependent on biotin. In another patient, tryptophan metabolism was a problem".
 
JES said:
I couldn't find the tweet where she advocates having one framework for all poorly understood diseases.
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Jonathan Edwards said:
I don't think she did. She suggested including 'comorbidities' in the scope. That included Ehlers Danlos, mast cell activation and maybe Lyme.
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@Jonathan Edwards is right, she didn't exactly say all poorly understood diseases.

In this twitter conversation about MEpedia, she writes:
Jen Brea said:
I would eventually like the frame to be broader than ME/CFS. But I don’t know how to frame the broader idea. It’s not for every health condition in the universe.
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However, the list of diagnoses is much longer than that. The 'comorbidities' she mentions (see for example this tweet and this tweet) are:
  • POTS
  • EDS
  • MCS
  • MCAS
  • 'mold illness'
  • chronic Lyme
  • fibro
  • hEDS
  • endometriosis
  • autism
  • etc.
And, if I'm not mistaken, also:
  • Craniocervical instability (CCI)
  • atlantoaxial instability (AAI)
  • chiari malformation
  • tethered cord
  • spinal fluid leaks
  • cervical stenosis
  • intracranial hypertension
  • etc.
Possibly even more than that, because when talking about "Nightingales" she also said:
Jen Brea said:
Define "related" as you like!
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Personally, I'm not a fan of lumping. Learning from the research done in other groups, definitely a good thing. Joining forces sometimes for specific advocacy campaigns about common issues, sure. But my impression so far, based mostly on reading the "Nightingales" conversations on Twitter and Jen's posts here and on Medium, is that this is something completely different, and I'm honestly feeling a bit concerned about the direction this seems to be going in.

Personally, I do not like the idea of mixing scientific facts about ME with hypotheses and speculations about all these other diagnoses and the speculative links between them, under one big 'umbrella' on MEpedia. I personally believe it would damage the credibility and the usefulness of MEpedia, but maybe that's because I have misunderstood the original purpose and aim of MEpedia?

Also, what happened to MEAction's values and policies process? There was a newsletter in November 2018 talking about surveys, polls, op-eds etc, and it said that the adoption would happen in April.
 
NelliePledge said:
On ME pedia well there’s nothing to stop people/organisations setting up a parallel EDS pedia or Fibro or Lyme pedia that can sit alongside it and link between but have Lyme title and contents. If I was a Lyme person I would be confused about going to something called ME pedia for Lyme info. Also could argue if you concentrate effort on getting ME pedia accurate and promote its use other groups will see it as a model and want to do the same approach for their audience.
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I agree. However, according to this twitter conversation Jen Brea thinks adding EDS, MCAS and POTS to MEpedia is a much better idea than them starting their own wikis.
jb twitter.png
 
Trish said:
My concern is that it is odd to include things like EDS, MCAS, CCI etc in MEPedia, when we so far have no evidence to suggest there is a connection other than the inevitable population overlaps you get with any conditions. There are people with ME who have migraines, asthma, hay fever, male pattern baldness, cancer, ... the list is endless.

I would much prefer MEPedia and ME advocacy focus on ME, and leave the speculation about possible biological connections with other conditions until there is research evidence to support a connection.
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This is one area where distinction is important and should remain. There will always be disease-specific research and resources, even if something like centers of expertise for chronic-immune-diseases-on-the-shitlit were created. This is particularly important because to the untrained eye they are superficially alike and so any specialist expertise will necessarily have to have knowledge of this cluster of diseases. We know for a fact many ME patients are diagnosed with something else and vice versa. GPs will never develop the expertise necessary to distinguish those.

For advocacy, I think it could be useful at times to work with other groups, for example on getting proper diagnostic and care services and financial support for people with ill understood conditions. That also includes fighting against the MUS bandwagon.
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Basically we need a federated strategy for advocacy, one that acknowledges both distinct differences while also recognizing that there are common elements as to why we are so badly treated and discriminated, one that focuses on the disastrous outcome, a human rights disaster caused by disdain and met with apathy.

The common element to all those conditions is indifference, medical institutions simply aren't interested in them and as a result sufferers are treated with disrespect and contempt and denied appropriate resources. The cause may be different but the end result is the same.

The common link isn't about genuine similarities, it's almost entirely about how we are perceived. Beyond that the specific needs for each disease are quite separate but there is a foundation we all share and it has nothing to do with us, rather with how it has been chosen to close the door on all of us, triple-lock it and leave us out to rot.
 
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