Daily Telegraph "What Long Covid might tell us about Chronic Fatigue Syndrome" article

Paywalled, any Telegraph subscribers?

https://www.telegraph.co.uk/health-...covid-might-tell-us-chronic-fatigue-syndrome/

 

Try installing No Script or some other script blocker - works on a lot single article subscriber material https://noscript.net/

Book discussed here: https://www.s4me.info/threads/book-long-covid-handbook-published-oct-2022.30095/#post-442973

 

I haven't read the full article yet, but I would like to say that my ME is not relapsing and remitting. I never have a remission from this. I always feel poorly, and often, I feel terrible. In my experience, there is never a break from ME.

If people see me out and about, that is not a good day, or a remission, that may be a less terrible day. Or, it may be that I absolutely have to do something, or be somewhere, even if I feel terrible.

ME can be variable, but this does not mean there are huge swings from bedridden to marathons, and back again. It just means one varies from feeling poorly to ghastly.

I don't know where this relapsing/remitting idea came from. I would hazard a guess, many, if not most with ME feel some level of symptoms all the time.

 

Agreed. Yes! I'm disappointed by some of the latest literature out there not emphasising PEM and getting info up to speed on that because from a 'what is the disability/you need to know' point of view that is the message they need to perfect. So that people know we have an envelope, which for many doesn't cover essential-to-life or must-dos, so when we set a boundary it stands.

The implications being orders of magnitude more than they can imagine based on their well-person 'tired' instead of 'ill' - like 'you just gave me glandular fever, thanks' when you hear of people tricking someone into a longer walk etc.

And if you see us pushing these there will be damned good reasons, but the cumulative effects add up.

Without talking PEM and (I hate the word relapse) deterioration noone will ever understand the condition. Or the ridiculousness of the past research - because the past research is their cliched tropes.

EDIT* and as I write this it gives me the shivers that the reason this deterioration longer term from pushing through short-medium is being dropped is heavily political/people getting tricked, because that 135 day rule is the difference between studying the illness and playing tricks with pretend placebo effects - and is the bigotry that has drive for me what would probably be a different illness. Without this bigotry I'd probably be mild and respected. I wouldn't have had all these years of no human rights to be who I am and tell people being damn rude and bigoted to my face that they should expect to be called out for that discrimination. It's been awful. 90% of my disability has come from all this other stuff instigated directly from that myth/misdirection/sleight of hand. And here it is getting done again (what - for long covid? or has someone taken their eye off the ball in the ME charities?) I worry.

That making someone do more than their body can cope with as a default - only they can tell you as you won't see the impact at the time - will lead their body downhill to iller and iller over many months. And that being 'in envelope' is only mainaining status quo vs that guaranteed deterioration eventually.

And no people don't connect their tropes (10% more than you think is good) with us using the term 'that means they think it is psychological' - it needs to be basic terms of 'limits'. Because we 'look OK straight after', and noone is telling them any different.

People can think it is a real illness and expect us to step up to push out limits each day thinking the impact isn't what it is. Because for some reason even the charities aren't underlining what the illness is.

It must be ever so frustrating for the few that currently do want to try and understand. The rest will never know as there is an adoption cycle (they'll read it because the early adopters will read the PEM stuff).


Variable doesn't cut it because people can see when you are pacing vs 'can't because you are in PEM' they just have been given no frame to bring this together.

Describing it like it's RA or lupus just to pander to 'communication norms' isn't going to make it that. It doesn't make it look 'more like a real illness' and doesn't aid good diagnosis. And the science now backs up PEM but not that anyway.

 

"Variable" is of course subjective.

My ME varies just a very few percent either way, in the worst moderate to low severe category.

We need biomedical testing - more accurate, more frequent, more available, and covered by government health care.

Then maybe when a pwME says they have moderate or severe ME etc., there will hopefully be more evidence and information on how debilitating this disease is!

 

Agree, same.

 

Have just read the article, it's pretty good. About the use of 'relapsing/remitting', I get the impression that the author erroneously used the wrong term, they should have said 'fluctuating'. Am pretty sure 'relapsing/remitting' means recovering and staying well for months or years, then having a relapse, then recovering for a substantial time, etc - eg like with malaria or similar. Whereas, ME 'fluctuates', in that you can feel a bit less unwell (not recovered, just a bit more bearable) for an hour or a few hours, then bam, it's all straight down the pan again, for no apparent reason.

That's fluctuation, not relapsing/remitting. A shame the author got the terminology wrong, as it is rather misleading.

 

Some people, and to some extent I would include myself, experience a form of ME akin to relapsing and remitting MS. Also it it is important as others have done to distinguish between variability and relapsing and remitting conditions, but also it is important to hold in mind that a remission can be partial not necessarily total remission.

When I first got ME associated with an active EBV infection over some years I showed steady improvement despite the ongoing variability inherent in my then lack of understanding of PEM, OI, food intolerances and hypersensitivities. This overall improvement was in conjunction with drastically reduced activity levels going half time at work, and continued to the point I believed myself recovered. In retrospect I did need to take care to avoid over exertion, so it was probably never a complete recovery. Over a further few years as I cautiously increased my activity levels until I had a bad dose of presumed seasonal flue (virus not formally identified), this triggered an immediate relapse in my ME. It certainly felt like an acute illness, with hypersomnia that I only experience at times of sudden onset deterioration.

Since then I have had periods of gradual improvement and gradual deterioration as well as episodes of sudden deterioration. With each deterioration, either gradual or sudden onset, I usually go to a lower functional level than before, acquire one or more new symptoms and subsequently experience slower improvement which achieves less increase in activity than before.

Subjectively it feels like my variation relates to at least two distinct processes:

• There is the variation that relates to day to day and week to week management, so if I can avoid PEM, OI issues, food that I am intolerant of and hypersensitivity issues, with sufficient rest I can gradually improve to a ceiling and that this ceiling relates to what I refer to as my underlying ME. If I don’t avoid the triggers, including PEM or push at the ceiling, then I experience a gradual deterioration, with additional reduction in the thresholds for the various triggers.
• But also I experience variation in what I term my underlying ME. This usually involves more sudden deterioration associated with an external virus or sometimes extreme over exertion, for example very foolishly I did a fourteen mile walk in winter over muddy ground and the PEM the next day ended up lasting several years. With these presumed acute phases obviously all the tigger thresholds for further deterioration such as PEM are lowered, but also when I can get to experiencing subsequent remission it is to a lower ceiling than before.

(Added note - in the earliest part of my ME I did very occasionally experience sudden spontaneous improvements, almost as if my ME switched off. One example was at 4pm I struggled to go up or downstairs, but some friends persuaded me to go to a restaurant for a meal, on the promise that if need be one of the group would drive me straight home. I found myself dancing in a night club at 2am with no obvious side effects. However I have not experienced anything like this since my flue driven relapse nearly twenty three years ago.)

 

I have, although I only returned to around 90% of normal function. Without even knowing what it was, I needed to do a bit of pacing; I wouldn't plan anything very physically demanding for the day after a long hike, for example, although doing my desk-based job was fine. Whilst I was fit and could exercise several times a week, I instinctively never opted for anything like the 10-day walking holiday in Italy that some friends went on.

The remissions lasted for several years and I didn't consider myself ill, simply assuming that I didn't quite have the stamina that some others do. Looking back, I still had underlying ME issues such as difficulty sleeping after a long hillwalk, but these can seem normal when they're not problematic or frequent enough to shout "symptom". It never occurred to me to ask whether other people experienced the same, I just imagined they did. It took 23 years to get a diagnosis of ME, partly because I gave up even approaching doctors after a lot of negative experiences.

My last major relapse was shortly before the millennium, and although I'm in much better shape now following early retirement, I've never had another remission like those first ones. I would describe my ME as relapsing-remitting in those initial decades, though, as it fits the pattern with other conditions of that type. People don't usually return to 100% normal, it's more that they have periods with much better function.

ETA: cross-posted with Peter.

 

I had similar experiences to @Peter Trewhitt and @Kitty in that I too had a period of remission - got ME in 1983 and after 4 years recovered enough to work, although only part-time, and have a social life, but needing to keep outings short and undemanding. After another 3 years I became what was to all intents and purposes fully recovered, able to have a normal life with normal physical activities and exertions. I did tire more easily from physical exertion than before 1983, but felt well and held down a demanding job and had a very active social life, for 15 years.

But then came my big relapse in 2005 when I and all my work colleagues got floored with a notably horrific gastric virus (I worked for the NHS and we were always catching horrible things as our work involved callouts to hospitals and clinics - which was likely a bad career choice for me or anyone else with a previously battered immune system). We were all sick for weeks but I was the only one for whom it became permanent, I guess due to my history of ME. And since then, it has been fluctuating, no remitting, sadly.

 

I thought the article was " pretty good" too.

If it had substituted a brief description of PEM and focussed on how this affected people with ME, rather than using the terms relapsing -remitting which have a specific meaning for many illnesses, I think it would have been one of the best I've read. My illness is very much related to PEM, two or three days of horrendous symptoms, maybe more, after exceeding my energy envelope.

It got in a lot- EBV, spoon theory, dreadful effects of GET, patient knowledge. More but am in PEM after grandchildren visit yesterday. PEM.

edit: last word substituted

 

I also have the relapsing and remitting kind similar to what's described with RRMS. I experienced remission in 2019 and stayed extremely well for many months, I relapsed black to the fluctuating symptoms in 2020.

I thought it was a pretty good article.

 

I think we're a bit caught up on use of the term relapsing/remitting. There's two possible interpretations of this phrase:

The first is short-term variations in symptom severity driven by changes in the degree of PEM you're experiencing. The article appears to use it in this sense. Sometimes other publications do as well. Using it this way is a bit less imprecise than discussing the course of PEM explicitly, as it connotes random variation due to changes in the disease process, rather than changes directly resulting from activity.

The second is longer-term variations of the illness itself, where your energy envelope or other symptoms change independent of activity. Most of us, including me, only use relapsing/remitting in the second sense.

 

Your clarification is handy @RedFox

I believe I refer to relapsing/remitting in the above sense too.

 

There are definitely types of LC and ME that mirror the types of MS. Relapsing-remitting isn't mutually exclusive with fluctuating either.

The types are similar to how MS is categorized, most people fit in one category, but there are several types. I'm not sure how long it would take for medicine to notice this, frankly. Without a biological starting point the whole system is unable to function. But having read thousands of testimonies every day for the last 2.5 years, this is obviously the case.

 

Yes, definitely. The term "fluctuation" is a much more accurate description. It seems relapsing/remitting is too dramatic a picture of what happens for many pwME.

The article may give readers the impression that health for pwME is good, or at least normal for significant chunks of time.

 

Thank you @Peter Trewhitt for noting remission can mean partial remission. I think that many pwME always have some level of symptoms, with perhaps some exceptions to this.