What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

Just an extra point - us producing our own materials that are better than what many of our charities currently produce will help establish our reputation, which will be helpful in all sorts of ways. I hope it will put us in a more influential position in dealing with charities, research funders, etc. and will help attract patients and researchers to the forum.

This is another reason why I'd prefer us to produce original materials and not copy things wholesale.

 

What about it do you think is wrong:

 

There's nothing about it being delayed or getting worse after time before it gets better, and I think it will read as though it's simple fatigue. Also, the phrasing 'ME/CFS may get worse' seems a bit odd - it's not that the disease is worse, it's that symptoms have worsened.

 

Also, I'm only used to seeing 'body parts' referenced in relation to serial killers!

 

But isn’t the “syndrome” defined by the symptoms?
And anyways, a lot of people decline in ability - ie. severity when in PEM, so “get worse” makes a lot of sense for that in my view.

 

I've seen several places suggest that PEM can be immediate in some people. CDC might have wanted to be inclusive just in case, so that someone whose PEM starts immediately isn't discouraged seeing this saying PEM must be delayed.

Edit: From another thread:

 

I don't know if this has been included but I think information on the various theories and myths about ME/CFS eg deconditioning, fear avoidance, over-achiever personality, broken down and laid bare (as @ME/CFS Skeptic has done on many a topic) exposing the science, the evidence or lack of to support the theory.
But in addition to all the BPS stuff, we should also include the other 'bio' theories that don't stack up or have limited evidence.

I think that a balanced and clearly informative science/evidence based 'report' to start with would maybe show what S4ME is really about and make any further information sheets more 'acceptable'.

eta:
maybe starting with what ME/CFS isn't before trying to explain what it is.

 

Also maybe some information about using supplements. I often see people on social media posting that they take like 30 supplements.

Apart from reiterating that most supplements have no evidence behind them, maybe there could be general info about placebo effect, confounders, and that supplements are drugs and can also harm patients in various ways.

I had once had the plan that I would just keep individually trying tons of different supplements, just to see if any caused any improvement. But I realized with a condition like ME/CFS, where long-term or permanently reduced baseline is possible, and where not much is known about how exertion causes that, it's very possible that a random supplement will cause the same long-term worsening, so not worth the risk. I was okay with the risk of very temporary worsening, but not long term or permanent.

 

I would make a distinction between my current symptoms worsening and the underlying condition worsening, though I find it hard to find the language to accurately describe this and on any particular day I am not always clear what is PEM and what is a worsening in the underlying condition as both are related to each other.

I see PEM as variation around an approximate level, though this is not a fixed base line, but one that can alter with the level of exertion and frequency of triggering PEM, but also that this approximate baseline can gradually or rapidly lower because of an ME relapse, a worsening in the underlying condition.

 

As @Trish has regularly pointed out we desperately need a consensus on terminology so we can say if an immediate response to exertion is rapid fatiguability or immediate PEM.

For me an immediate response to exertion, as long as I am not in rolling PEM, has more in common with normal fatigue so as long as I can immediately stop the activity and rest straight away, recovery is prompt and I do not experience any of the paradoxical aspects of PEM such as symptoms unrelated to the activity emerging and symptoms worsening over a period of time despite any rest. So I see PEM as an abnormal delayed response to exertion but an immediate response as normal but more rapid fatiguability.

However I don’t know if others experience is similar or very different to mine. When in rolling PEM I can experience the more paradoxical aspects of PEM immediately, and I would distinguish that from rapid fatiguability though at such times both are happening at the same time and both impact on each other.

 

I also remember Jen B stating that when she woke up from surgery that she knew 'instantly' she no longer had PEM.

This was all over social media where doctors and researchers follow her on X.

 

Do we have the technology to detect that in PWME? If yes, I assume the tests were negative, else it would be newsworthy.

If it's possible to induce those symptoms intentionally (without long-term harm), it might be a useful comparison against ME symptoms. If an injection of 2.5 mg of LPS gets the response of "I can't tell the difference between that and my typical PEM", wouldn't that be useful information?

 

I agree with those objections. Maybe something about "PEM is typically delayed 24 hrs after physical exertion, but is (typically?) shorter after cognitive exertion." I don't know enough about immediate PEM to judge whether that's the same as delayed PEM or is some other mechanism.

I also agree that PEM should be clearly differentiated from the usual symptoms of exertion. It is not standard fatigue or muscle soreness. I also dislike the claim that ME/CFS causes severe fatigue, since that confuses ME's fatigue-like symptom with standard fatigue ("Just rest a bit, or have some coffee...").

I don't recall my PEM getting worse before it got better, aside from the abrupt flare at the start.

 

Well, it is basically what it feels like to have typhoid vaccine. So people who have had typhoid vaccine should be able to tell us that.

But we already know that in ME/CFS it is not going to be TNF or LPS because that would raise the CRP and the CRP is normal in the great majority of cases.

 

To me it is a neat way of giving a simple description. ME/CFS is the symptoms, not a disease. But, as Trish has pointed out, it is also a state of being liable to have symptoms that can shift up and down (still not a disease). PEM can be seen as having more symptoms and/or having symptoms in response to less provocation. ME/CFS is all about having symptoms in response to provocation so PEM is 'ME/CFS getting worse'.

 

Understood. I don't particularly see a need to write something different for PR purposes, as Sasha suggests, but equally I see the case for giving an independent view. Maybe it might even be good just to allude to the CDC piece as something S4ME is in broad agreement with - as a citation - so that readers can be reassured by consensus.