...to find the Long Covid narrative quite thoughtless towards CFS/ME/PVF sufferers?

[Jourdain11]

I don't think I can express what I'm thinking very effectively! But this has been bothering me for a while.

I'm not a Long Covid denier and I can absolutely appreciate that it must be awful to have it. But I also feel like the narrative around it - "this is a completely new thing, no one can imagine what this is like" etc. - really disregards and minimises the suffering and experiences of those who have been living with ME/CFS/Post Viral syndromes for years. If I were of them, I can imagine I'd feel quite resentful!

Likewise, if you go out breathing Covid on people you're a selfish murderer... But people going to work when sick etc. has been an issue for those with compromised immunity since forever. But it seems like it is only an issue if it's Covid.

I'm not sure what my actual point even is. I think it's that other conditions and so on should be given consideration, not just Covid-related ones. Or am I being petty and stupid?

Yes - petty and stupid.
No - there's some sense in this

I agree OP. I have a chronic illness & recently I've been feeling absolutely exhausted, much more than usual. I'm honestly wondering if I've had coronavirus without any symptoms & this is just the recovery stage, or if I have some kind of post viral thing. I'm taking 5 hour naps at least every 2nd day & have been for about a month, & start shaking with exhaustion if I'm standing up for more than an hour or two. Maybe it's just first stage of menopause, I don't know but it's crap.

I could not agree more OP.

I have CFS and I actually feel positive about peoples attitudes to long covid. CFS and ME have been seen as made up things that afflict anxious women who just need to do more exercise or relax or whatever to get over it. I think long covid has shown that actually fatigue is a symptom that's different from normal tiredness, and that it can happen to anyone even people who were young / healthy / mentally fine etc. So I think understanding about long term things like this has increased. Its shit that people weren't understanding before but surely it's a good thing

It’s just because it’s prominent right now, and I suppose that the prevalence of cases means that additional studies about it can be made. But you shouldn’t be be feeling resentful about the attention it’s getting, especially as some of the additional research that is being carried out may provide your condition and others with new treatments as a result...

@MyDcAreMarvel I didn't doctor shop for the collective opinions that I received. The CDC snd NIH are investigating people who have developed blood clots and myocarditis post vaccine administration (but I suppose the first symptoms I started with post vaccine was myocarditis but I guess I'm making it all up!) New vaccine research reveals 22 days post vaccine to develop symptoms. I am not spreading dangerous, unproven info am sharing my personal experience. I never dissuaded anyone in my family to not get vaccinated. Idk how you can argue with someone you don't know and aren't treating them!

YANBU. I don’t have ME/CFS but I have a condition that leaves me fatigued. I can’t help but feel frustrated at “but what about long covid” without remembering there are other conditions too.

You have a point op.
Post viral syndrome has been disbelieved for years.

I hope this will cause a change but from a conversation I had recently I'm not sure it will make a blind bit of difference to most people's perception.

Yes I’ve had it for over 20 years from having the worse flu of my life. Havnt had any help or support. Was bed bound for years. Ended up in A & E few times with UTI or similar with doctors telling me they had never heard of Me/CFS. I hope that doesn’t happen today but it probable still does.

@Notjustanymum

It’s just because it’s prominent right now, and I suppose that the prevalence of cases means that additional studies about it can be made. But you shouldn’t be be feeling resentful about the attention it’s getting, especially as some of the additional research that is being carried out may provide your condition and others with new treatments as a result...

I'm not resentful and I don't actually suffer from any post-viral/functional issue, so this doesn't impact on me personally. I'd be very happy to think that the increased research into Long Covid would ultimately lead to better treatment and awareness of other chronic conditions. But I'm not convinced it will. And the whole narrative of Long Covid being somehow different to (and more serious than) any other post-viral condition seems unlikely to help matters in that regard.

And quite frankly, I feel that if anyone has a right to feel "resentful", it's people who've been ignored/ridiculed/disbelieved by the medical profession, their employers and society at large for years. It doesn't mean they are unsympathetic to Long Covid sufferers. But imagine that you twisted your ankle as a kid and your parents said to you, "get up and walk and stop whining", and the next day your sister twisted her ankle and your parents allowed her to stay in bed and miss as many days of school as she liked!

I have had ME for 23 years, the last 8 years bedridden 24/7. The letter I will copy out below by someone with ME to the Independent newspaper mostly sums up my feelings on it. Only point of difference is the letter writer says ME is all but the same condition as long Covid whereas my view some people with long CoVid (long CoVid is an umbrella term) may end up with a chronic illness all but indistinguishable from strictly defined ME but still early days so nothing certain yet. The medical profession massively let down people with ME; I really hope the same mistakes won’t happen to long Covid, signs suggest thankfully they won’t - although there are some wrongly trying to frame it as largely psychological.

“Firstly, let me state that I have every sympathy with those suffering from long Covid. However, while not at all intending to detract from or belittle their battles, what is increasingly uppermost in my mind is the number of people like myself who have lived with ME/CFS (chronic fatigue syndrome) for decades, and largely had little or no acknowledgement, support or care.

ME/CFS are all but the same conditions as long Covid, with all symptoms being documented as virtually identical. Yet, over the decades, many of those with ME/CFS have been totally dismissed and treated despicably, not only by the medical profession but also by their relatives, colleagues and friends.

I was diagnosed with ME following an episode of glandular fever as a 15 year old in 1973. I have lived with this extremely debilitating illness for 48 years, at times virtually bed-bound for anything from 8-12 weeks at a time. I have developed numerous other illnesses and conditions over the decades, which are believed to be as a result of the glandular fever and ME.

It is a fact that many reported cases of long Covid are very evidently nowhere near as debilitating or long-lasting as ME/CFS. Only a very small minority of those with long Covid experience symptoms for more than 3-6 months. Many with ME/CFS face a “life sentence”.

At a time when there is a massive focus on caring for people with long Covid, I believe very strongly that it is now time for all those in the medical world to acknowledge the great injustice that has been done to ME/CSF sufferers, and accord us all the same level of care and compassion which is being given to long Covid patients.”

This crossed my mind, as my sister has CFS. Hopefully it will be researched more as a result though.

Quite agree.

Post viral symptoms are nothing new. Some suffer really badly, some very mildly. They don't need a name for their condition beyond "post viral fatigue" or whatever.

But then Covid comes along with all these people who think they're oh so special and oh so different and LONG COVID.

Zotter that is a great letter

This sounds promising:

meassociation.org.uk/2021/06/nature-article-the-four-most-urgent-questions-about-long-covid/

Oops sorry. From the link:

What many do agree on, however, is that the two conditions could productively be studied in tandem. “There should be a coalition,” says Alwan. Some researchers are already planning to collaborate. For instance, a major study called DecodeME aims to recruit 20,000 people to find genetic factors that contribute to ME/CFS — and Evans says PHOSP-COVID will be sharing data with it.

“I’m really hopeful that the silver lining will be, at the end of the day, we gain better insight into other post-viral problems,” says Akrami.

@Notavegan

This crossed my mind, as my sister has CFS. Hopefully it will be researched more as a result though.

That is my hope too.

@PurpleyBlue

Oops sorry. From the link:

What many do agree on, however, is that the two conditions could productively be studied in tandem. “There should be a coalition,” says Alwan. Some researchers are already planning to collaborate. For instance, a major study called DecodeME aims to recruit 20,000 people to find genetic factors that contribute to ME/CFS — and Evans says PHOSP-COVID will be sharing data with it.

“I’m really hopeful that the silver lining will be, at the end of the day, we gain better insight into other post-viral problems,” says Akrami.

PurpleyBlue, thanks for sharing. Agree!

It's frustrating when the media report delays of up to four months for long covid referrals, when others with long term conditions have experienced waits of two and three times that in recent years. Both are unacceptable, but allocating funding to one particular area (rather than treating it alongside other post viral conditions) inevitably means more cuts to other areas.

Yeah, I get you OP. I have a chronic condition that causes fatigue, there is treatment but it’s been largely ineffective at relieving my symptoms, so part of my rolls my eyes at long Covid and just thinks, ‘welcome to my world’. Probably not very nice of me but years of being dismissed as lazy or a malingerer will do that to you.

I hope it means it will all be taken more seriously. I know someone who had a minor illness and afterwards got a post viral syndrome so severe that ten years later he can still barely walk.

I’m so glad you started this thread as the silence in the press had been disgusting

I developed CFS 20 years ago whilst working as a HCP, people even colleagues tried to blame my mental health

It took 10 years by which stage I was unable to walk and barely functioned to find there actually was a physical cause in my case

In that time I was ridiculed by doctors when I pointed out responses that occurred to steroids, iodine and others, my final expensive specialist told me there was nothing more to be done

Amazingly I found that I was actually a hidden coeliac with profound vitamin and mineral deficiencies leading to pernicious anaemia

I’m angry that so many of my fellow sufferers have been ignored or frankly treated as mentally unstable but then along came Covid and the sexy new long covid and because it has a visible cause they are automatically believed and get support and resources thrown at them instantly because they don’t have ME/CFS they have long covid

they get get support and resources thrown at them instantly because they don’t have ME/CFS they have long covid

As ME was wrongly framed as largely psychological and any paltry research funding all went on useless psych research, no effective bio medical treatments have been developed which may have helped people with long CoVid too. The long CoVid clinics can offer little, like the useless ‘CFS’ clinics, and some with long CoVid are sadly reporting the clinics giving potentially harmful advice.

*some of the clinics