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

Very very much agree.

 

I wouldn't fit that label, since "fatigue" isn't one of my symptoms.

 

Without fatigue or post-exertional malaise, if you feel willing to share, why would you say you have “mecfs”? Are you saying that it’s more exhaustion, weakness, inability to perform rather than “tiredness” or you don’t have this type of issue at all?

 

My main symptoms are brainfog and lethargy, and "lethargy" is definitely different from "fatigue" or "tiredness". I can do strenuous physical activity for hours, so I do know what normal fatigue feels like, and ME's lethargy is quite different. Sometimes it feels similar to the result of a tiring activity (to me that's something involving a lot of standing or limited walking, such as shopping with someone else). On good days, I can accomplish tasks; on bad days, I just can't work up the motivation to do much, and I'm likely to make lots of stupid mistakes, so better off to just read a book or whatever. On bad days, I do not use power tools or do other potentially dangerous activities. Just a bad choice.

On bad days, I might also experience pain of some sort, with no obvious non-ME cause. I have other problems that started during my ME, such as double-vision. When I go through the CCC or ICC, I can tick off enough categories to qualify, aside from PEM, which I did have in a fairly standard format but no longer have.

 

I am not sure that 'fatigue' in the context of ME or CFS diagnoses is intended to mean the fatigue that occurs after strenuous exercise. Fatigue is used to mean quite a range of symptom clusters that can occur with flu or anemia or arthritis or old age quite apart from exercise. A lot of people with ME/CFS seem to agree that fatigue is too ambiguous a word to pin down what they have but that does not mean that it doesn't fall into one of the several meanings most people might think of. It sounds to me as if what you call lethargy Amy well be what is referred to as fatigue by medical professionals making a diagnosis of ME/CFS.

 

Yes, vague definitions really aren't helping with ME research or education.

 

I’m aware this very likely isn’t feasible for a large multitude of reasons, but I feel like S4ME would be uniquely qualified and good at conducting literature reviews.

Especially on the characterisation of ME ie.
“Infection severity and development of ME/CFS”

 

For sure that's not what we mean, but this is what the psychobehavioral model describes. This is why they often mislabel PEM as post-exercise fatigue. And why PEM keeps being conflated with feeling rotten after exercising following a long period of sedentarity, because they absolutely don't understand the concept and describe it wrong on purpose.

Even though post-exercise fatigue actually feels fantastic to a lot of people. A few are even confused about some of this being DOMS, Alan Carson wrote about this sometime ago following Wust's research. They are utterly confused and inept, but in full control of the issue. Weird as it is.

From everything I've read over the years, I'd say that about 99% of MDs make that mistake, because of the dominant psychobehavioral model. So although we here do understand it, almost everyone else is explicitly, sometimes intentionally, confused about it.

And unfortunately we are still stuck at this stage. The same stage for over 4 decades. There has been zero progress getting this basic fact across.

 

I had an unexpected worsening of my symptoms yesterday, and it definitely didn't fit my concept of "fatigue". "Malaise" fits better, although that's also a vague term.

Are there any toxins that cause symptoms similar to ME's brainfog, lethargy, and malaise? I'm talking about that feeling lousy all over and just wanting to crawl into bed and hide until the feeling goes away. Being able to say that ME feels like <whatever poisoning> might be more helpful for communicating to doctors than "fatigue" or even "malaise".

 

I understand that’s how you felt but I’m not sure describing it as wanting to crawl into bed until the feeling goes away helps

but I’m coming from a different background where for decades I had even when I had flu on top of moderate ME to do things like give presentations or travel and be at physical exhibitions whilst hiding collapsing here or there in the loo or wherever or not hiding it and then feeling even more lousy but having to still turn up under the threat of life getting worse, being shouted at and having no support or back to ‘you can live on the streets if you lose your job’

or sometimes it was better and I just had to get a piece of work done or essay submitted and had three days to hope for my brain to be able to do that. Desperately trying to work out how best to make that happen.

In a way thank goodness with the presentations that was a lot easier to blag trying to stand and speak learned words I didn’t need to think about and people are happy to look away in general if you are happy to smile and say it’ll be fine when you collapse. It’s amazing what people will choose to believe ‘seems to not bother you’

none of this was about motivation or choice snd I firmly tested that pushing through makes you worse.

and I didn’t get time or choice to think how I felt - just everyone else’s dominate you and if it doesn’t count or matter you’ve been trained whether it’s CBT or not that it doesn’t matter so it’s so hard to connect to that but anymore if you’ve had decades of that. I just can’t move often have to lie flat and wait until the window so that I ‘can do’ the next thing that’s lined up as most urgent hanging over my head.

I know I feel awful and I’m still daily trained and told no one wants to hear the details of it even when it was an ‘explain yourself’ situation. I don’t know what to do in medical appointments because I’m asked a question and am not like others who don’t feel scared saying things and I’ve had to use my tiny energy on other things than thinking or noting stuff no one cares about and I don’t want to get assumed to be a loon if I’m honest anyway. I don’t have top of head answers to what a pain feels like. Because I’ve been ‘trained’ out of it ‘to be polite to others having to hear if my suffering’

now I am worse in that same person just as tenacious to survive vs the normal people and just getting a cup of tea or knowing I need to do x to get a Precription is the same amount if exertion and tenacity involved to do the impossible

I’ll be stuck in bed for so long and my feeling is just hoping I’ll get to see outside again. My light at the end of the tunnel is in four days I might be capable of but by bit finally getting my hair washed so I feel less disgusting. But I don’t dwell on it as feeling because it’s a life of to do lists still

yet people I’m sure choose to believe all too much that’s bs and somehow it’s not my body that’s shot from that ‘I’ll choose not to believe you just sorry it and show me if it hurts you one more time’ attitude where people never intend on ever seeing the consequences and updating their behaviour to realise next time you are more ill and the lesson they should learn is to believe your assessment not their own presumption. And even if they did there’s an endless supply of new interferes to step in and make sure the next time it’s the same attitude anyway.

 

Yes I’d be interested to hear more about this new pattern vs the symptoms and disability/limitations you are having to navigate @Creekside

It’s quite hard grasping another concept without maybe a few examples to bring it alive / relate

 

The only "newness" of my ME is which foods or food components I'm sensitive to. My main symptoms are lethargy and brainfog, and the severity mainly depends on dietary sensitivities. Some days I feel clear-headed and feel like going for longer than usual hikes; other days I don't even want to do my usual 45 minute walk. Some days my journal entry is "walked to the bridge", and others it's "trudged" instead of "walked", and sadly less commonly "walked briskly" meaning that my severity was below my usual baseline. Sometimes the response to a food also makes me slack-jawed, and other times clench-jawed. Not a significant problem, but a sign that something isn't right.

On worse than usual days, I might experience aches, or that general malaise common with a flu. Some days I can't even enjoy reading, because I can't seem to focus on the writing. Trying to do any craft work is an exercise in frustration, since I make stupid mistakes, and every minor hassle (a tool not being where it should be, something falling off the bench, a cord catching on something) seems blown way out of proportion. On top of that I have to wonder what food might have become my latest unexpected intolerance.

Two days ago, I gave up on sitting and reading, and lay down (which I rarely do in daytime) because my symptoms were unusually severe. I think it was because I used curry powder (contains turmeric) instead of cumin in dinner the day before. Turmeric is one of those things that I could tolerate at one time, but worsened symptoms the last time I'd tested it, but it was a reasonable time for another test. I certainly didn't expect that severe of a reaction. That had mostly passed by bedtime, but I ended up with insomnia at 3:30 AM. I think I'll avoid retesting turmeric or ginger for another half year or more.

Is that the sort of detail you were hoping for?

 

Yes that’s great thank you! - it’s just useful to have that mental idea of the bigger picture to slot other comments you make eg about something specific into so I can get a sense

 

Sure, lipopolysaccharides or endotoxins from bacteria does that. They interact with a complex of molecules on macrophages and other cells (CD14, TLR-4 etc.) to induce release of tumour necrosis factor and other things. Interferons will also do it, I am fairly sure, in response to foreign antigens.

 

I find it helpful to have a look at others' explanations to get a clearer sense both what could make sense to do in a similar way (i.e. structure, length, some wording?) and what should be done completely differently.

 

Not sure whether it's OK to further comment before we know the committee's take on this project, but also not sure whether I will be able to comment then, so just leave that here now:

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Sounds very good.

I was wondering if in addition to 'easy' factual references, including references to the NICE guideline, something like a linked 'fact check' text on each claim/ controversial issue could accompany both the info sheets and the longer articles?

Those could be added at any stage. Also could then be linked from an FAQ page.

They could also include links to forum discussions.

So there would be both easy accessible info but people also could see how the accuracy of each point was assessed and inform themselves more about the degree of certainty/ uncertainty/ plausibility of each point?

 

That does look remarkably good to me. There are things that could be expanded or more specific but it is written in a totally matter of fact, transparent way and to my mind gets pretty much everything right. I might even suggest using it wholesale (acknowledged) or with a few cuts as an opening to some further more exploratory discussion.

 

The description of PEM is wrong, surely?

I like the fact that it pulls out key points as a starter, that it's reasonably short at 650 words, that it's broken down into short subsections, and that the language is simple and clear with short sentences. All of these things will be helpful for PwME because so many of us have trouble concentrating - and because newly diagnosed PwME will be under stress and probably finding it difficult to take information in.

Because we are Science for ME, I wonder if we will want to give references where appropriate for our pieces.

Someone suggested upstream that for each piece we're going to write, we collect what has been written on that topic by other charities. I like that idea, with a view to cannibalising the good bits, ditching the bad bits, adding anything we think is missing, and writing it up clearly and simply in our own words. I'd rather we paraphrased even a good article than take it whole-cloth and have the issue of getting permissions. Getting permission might be especially difficult if we've changed bits (and I see bits in the CDC piece that I would want to change). Dealing with a government agency such as the CDC is likely to be difficult for us - and I would suspect the same could be true of our charities. I'd rather see us as an exporter of materials than as a curator of stuff from multiple sources.