“Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

So far as I know, zero. Number of patients is one so far as I know, and a Stanford patient, and the highest SD I ever heard of in a medical study - but that it entirely missing the point unless you are curious about what that marker is. Get in line, I don't think its published yet though I could be wrong.

There are so many markers in us that are abnormal, that you might argue its not ME, or its not CFS, or some other similar disease, but its still a finding in one of us. At the research chemistry level it very much looks like an ME patient has way over 2000 things wrong with them but this is an inference. So the diagnosis might be wrong, or misleading, or cover many different diseases when its finally figured out, but my point is there are still thousands of things wrong. Even if a single patient has specific abnormalities, it fits my point. What we cannot do from that is extrapolate to findings in other patients, as the number of patients is too small. This applies to just about all of our studies though. Too small, on too low a budget, and with too many limitations on patient selection. Even repeat CPET only shows a problem in about 86% of us.

We also have the big issue that this is over a great many studies, so the cohort is different in most of them. Because all these tests were not done on one single cohort in a specific time frame, we cannot be sure how many will cluster, just as we cannot be sure a single cohort is typical. We also cannot be sure that every single finding is accurate and not an error. However with what is possibly way over 3000 findings now, many found in study after study, its entirely wrong to say nothing is wrong with us, or patients like us. There is only nothing wrong when you run tests for other diseases, or a limited range of exploratory tests, or maybe a rare individual who indeed has nothing wrong who is an outlier.

We also cannot be sure of the importance of these findings. Many might be secondary issues, not important in the final analysis. Indeed I strongly suspect that one or more key findings have not even been made yet, and will give us the chance to explain so much more about the disease when we figure out secondary consequences of that finding.

What can be said is nothing is wrong that typifies ME with 100% reliability. So no diagnostic biomarker, yet.

 

it has been discussed before, but Stanford had decided they would forego punishing and instead focus on finding biomarkers. So at this point, it is uncertain whether they will publish this finding and whether this has been tested on a bigger cohort. Scientific publications matter, especially in a field like ours. If it not in the literature, it does not exist. Conference talk is simply that.

 

Two of the most common sources for clinicians in the US are the CDC and NIH:
https://www.cdc.gov/psoriasis/index.htm

https://www.ninds.nih.gov/Disorders/All-Disorders/Multiple-Sclerosis-Information-Page

https://www.niaid.nih.gov/diseases-...etic and,of parents without allergic diseases.

 

Those are informal lay information pages. Nothing to do with medical definitions.
No clinician is going to think MS is defined like that. It is defined in terms of CNS demyelinating episodes multiple in space and time and has been for decades.

 

Yes, I'm sadly familiar with the concept of corrupt science. And you're right that prevalence or popularity does not necessarily mean good science, but it may suggest dogma. As for evidence and what can be proved, this is a good rule of thumb, but it can be undone by something as simple as who's dictating the evidence.

Studies do have flaws. Some can be quite deliberate.

Science is a method. It's practitioners do not always approach that method with the sole goal of learning. When medical knowledge becomes secondary to something else, it sometimes falls on to patients and their advocates to right the wheels and reset research sights on knowledge. I think we can do that with the proper narrative.

But, eh, that's easier said than done.

 

You said no causes were included for three conditions. I spent 5 minutes googling the two largest and highest regarded medical references in the US, and my first hits included causes.

As for what clinicians will or will not believe - it has been my experience that most will believe the first thing they see from a "reputable" source. Geez, you give your average clinician a study to peruse, and nine times out of 10 you're lucky if he/she finishes the abstract.

I worked in a research firm, and we learned early on when marketing our findings (we had competitive findings to argue against) you've got 60 seconds (or one short compelling paragraph) to win someone's attention and generate an impression. Better make it good.

 

I wasn't very young when I got sick (it happened in my early thirties), but I still had this experience. I've never made a secret out of my disease but recently I posted about my illness on my personal Facebook wall and how it is chronic and how terrible it is when people think it is something people can get rid of out of sheer willpower, the common belief that a lot of this depends on your attitude, your inner strength, whatever. That if you don't recover you probably just didn't want it enough etc. (I actually posted this about chronic disease in general, not just ME/CFS, I didn't even name my illness in that post).

Well, I got a million comments from people that were like: "I hope you'll get better soon", "you will be able to fight this", "you're still young, your whole life is ahead of you, you can get better" etc. I think they of course all meant well but it really rubbed me the wrong way how they absolutely didn't get what chronic disease means (or what my post was about). I think when most people hear chronic illness they think of cancer or something similar.

(Bonus joke: a guy I only knew a little sent me a private message about how terrible he felt when he had rheumatoid arthritis, even started to drink etc until he found a "professional" who helped him recover. Without knowing the nature of my illness he told me this "professional" will surely help me - he never explained what that person actually did. I politely declined, stating that it is known that my disease currently has no cure. To which he replied: "well, you'll reach out to me when you are ready". Facepalm.)

 

Occurred to me that Jonathan pointed out that the term for rheumatoid arthritis could be include "D4"*. A GWAS study, into rheumatoid arthritis, would, presumably, quickly identify the gene that codes for D4. OK more difficult in the case of ME/CFS, since the population won't be as well characterised; however, it does illustrate that GWAS provides a way to begin to understand the disease pathology - identify biomarkers ---.

*https://www.s4me.info/threads/“dr-k...mifications”-podcast.25344/page-3#post-414290

 

Yes, 'fighting cancer' is used a lot when in fact it's the medications that's doing the 'fighting'.

 

Yes and I of course didn't mean it in a way that you can recover from cancer with your willpower but I meant it as an example of a disease where it is possible to recover, so it actually makes sense to wish cancer patients "get well soon". And people probably have something like that in mind when they think chronic disease. Unfortunately it really doesn't apply to every chronic disease, especially the ones that people are very unlikely to recover from and are basically a life sentence.

I agree that telling a cancer patient to "fight" cancer sounds just as bad.

 

What is really confusing - and has just struck me (for some reason I never pictured this before) - is that if the history is as I have read it you would have had people with ME/CFS on wards with people who had depression. I've seen those with depression of various types up close. You are 100% correct, there is no way at all that any person - whatever their training - would see a number of one and the other and not conclude they are vastly and obviously different illnesses. You wouldn't even put them in the same 'type' given the weird 'ups and downs' of ME energy-wise, aches and pains etc through a week, months and even a day vs depression and the obvious physical impact vs - do they call the depression 'fatigue' too, even though it is markedly different?

To the point where I'm thinking of certain videos and the likelihood that some psychs perhaps don't bother themselves much with wards and don't really see patients therefore/don't have this experience - but also must be of the type where they don't want to hear any information from those staff on the ground who do/did, where it contradicted their presumptions.

 

Do you mean something along the lines of what is discussed in the following?: https://www.the-rheumatologist.org/...-of-lupus-as-a-systemic-disease/?singlepage=1

Probably not the perfect example, but on the basis of speed and sticking within descriptors being of history and symptoms rather than 'cause/infection-type' ie the article notes that the grouping and then differentiating and intricate history taking was important in understanding/getting to grips with what turned out to be different types etc?

 

In part, but this appears more about the protracted trajectory an accurate description of a disease often must take before it is adequate.

Maybe me referring to the issue as a loop was a poor analogy. We are boxed in by lousy descriptions. Worse than lousy, they are harmful. They shape new researchers perceptions even before they've started researching. This box is walled by built-in psych planking, and we have to break out of it before genuine research on a systemic global level can occur.

How do medical definitions evolve, generally speaking? We perform studies on a new condition/disease and let those studies generate an understanding of the scope and characteristics of disease. The studies lead to medical definitions and protocols (both diagnostic and theraputic)

What can happen when studies are governed by prefabricated definitions, when the process is mostly reversed? We stay in a loop, or rather, we remain boxed in.

ME/CFS is one of those few diseases where, in large measure, studies didn't build the medical definition. Instead, poor definitions and qualifiers (lingering fatigue, brain fog etc) determined the direction of the studies. To worsen the mixed-metaphor clutter, someone put the cart before the horse, and we can't figure out why we're not going forward very well.

Then there is the issue of who is driving the cart.

 

One of the earliest arguments from our BPS overlords is precisely that they can't tell the difference, which to them means there isn't any. They seem to think it's a convincing argument, when actually it shows they clearly understand neither, and probably not much else.

Ideology overrules both training and reality. The presence of ideology in medicine is wrong in itself for that reason.

 

and the 5min snapshot from 'a professional' somehow counting for more than someone else seeing 24/7 - which is where the illness becomes blindingly obvious. What they say plays to that snapshot situation maybe for an illness where the overdo then collapse out is the distinctive part.

It is like writing a description to assess those with heart conditions that need ECGs/shows up in exertion or allergies based on someone suggesting 'they always look fine in the surgery, ignore whatever else they bang on about'. Now I'd be intrigued to know the history on those sorts of conditions too, because I don't know whether as you say it is 'culture' that is 'intrained' (ie orders from above whether the individuals agree with it or not) to assume everyone is making stuff up until you see it first hand, until a condition gets put on the 'red flag' list and they get made to not do that anymore because I'd guess of 'incidents that happened' or campaigns etc?

 

Some believe what they've been taught. I imagine them as mostly emotionally uninvested and intellectually indolent.

Some know better. There's a whole flotilla of reasons for that breed's stance, none of them ethically good, as far as I'm concerned. I'd wager history will not judge them kindly. No amount of "incidents that happen" likely will change most of them.

 

Agreed. I think switching to better understand PEM and consider it a 'core' is important. In the 'chicken or egg' claim of fatigue vs PEM over all these years, whether 'fatigue' (of its 100 different kinds) came first or because of or both, the PEM is the consistent across severities. But how is it demonstrated in a 10min appt? Well I think that is where you are correct that we have a 'loop' and that it has been created by a system landing e.g. GPs with nothing for one and the 'tangible' see in front of your eyes having options.

And at the moment severity has to be on 'debilitations' and PEM to us is the 'how often/how little to elicit it' then 'different level of symptoms/debilitation', for the purpose of 'the system' I guess averaging 'how bad for how much of the time' is that. Whilst we know the 'how protected from everything/cut off from access to basic life and things' is actually also 'it'. I guess even BPS knew that when they cynically or misunderstandingly decided to make half the 2007 guideline 'avoidance' and 'reactions'. So yes, even they picked up on the 'defining feature'.. and misdirected there.

What I'm trying to ask is... what would a good process for getting these descriptions up to scratch look like?

And agree that the right foot on these probably does become necessary for research - even if it doesn't seem so. Because even if the end result isn't found by studying PEM directly, it needs to be understand in order to control for it. And probably 'type' it.

And also trying to think about other illnesses that might have been symptom-wise amorphous-seeming at their time and how that history progressed/where breakthroughs some from.

'methodology hurdles'
So the 'let's shortcut to the testing because it'll be just as quick/history requires so much resource to this level it is insurmountable without asking for funding on blind faith' also has similar hurdles. It's almost circular. So yes, your 'loop'? Case study - scattergun testing - grouping on history all have such an intricate level needed and unusual variations for ME vs other illnesses.

Because the symptoms (and probably any markers) vary 'within' people as well as 'across', and so much happens with these and stimulates them we have processes 'layering over each other' (rolling PEM). Plus probably either needing specific and high-level methodology or 'new tools' (e.g. if things are 'inside cells' or systemic, variation over time etc).

How do people get an 'in' and anywhere near the resources for the intricacy of design (or recruitment even needing a lot) whilst an understanding of these complexities are 'briefed against' and we live in a 'keep it simple' world. Even if the answer was in 'fatigue' it'll keep coming up 'no consistent pattern' or even 'clusters' potentially if you aren't controlling for the bit that sends bodies haywire in different ways over different time periods.

I had a gut feeling for a while that going with the idea of 'types' chimes, and using intensive histories would help to tease these out and better describe the 'trapdoors' and 'where the phenomena are' (e.g. to we 'elicit PEM' to measure something and how do you do that to a certain level and know it). Then there is the other issue: if people were able to truly trust the researcher (in the sense of doing a 'tell-all') - and that has also been directly influenced by the risk 'loaded onto patients' by prior suggestions and conceptions, as well as cynicism we get bashed with daily.

 

Good post. And it is beyond me. For the narrative, the definition, one phrase or even word at a time. But I fear so much more than editing factors into what gets play time.

No excuses, though. It starts with wording. Patient advocates need to stop giving ground.

 

Well said. Ambiguity is the enemy - and that applies for many subjects that nuance is absolutely vital to get everyone on the same page - whether for a strategy or talking about the same thing or anything else.

Whilst we are on it, just to show how habitual these things become I don't think PEM is the right phrase - PESE is more accurate at least because it denotes 'symptoms' and that these individually might be 'of interest'. I've never known 'malaise' to involve a rheumatic feeling in joints and sore muscles that even if the world's biggest couch potato was made to do World's Strongest Man would not be able to replicate. Of course these two symptoms are direct reactions to different things over different time periods - both of which are abnormal symptoms for the 'amount of exertion/time' - but the important bit being that they are not the same thing.

If anything research into vocab and specifics would provide some fabulous Indie album/song titles "1,000 different brands of fatigue", "just because my body waits until you've walked away to fall apart ..", "watching a film 30mins a day to avoid collapse"

I'd love a diagram forum to be something that the future 2030 or whenever brings - where you can doodle and everyone can then tweak and post and you eventually get a slide show, words are a problem indeed.