...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 have an autoimmune condition, I was dismissed for years with my symptoms and at times they were very debilitating. My condition is not taken seriously at all. Good luck to those with Long Covid who need to see a specialist. I hope they get treated better than I did. Im sorry Long Covid sufferers have their awful illness, but the one thing I do hope for is perhaps doctors will actually listen to people, take them seriously and try and obtain proper treatment for them. I also hope it leads to more research in general, into debilitating, chronic illness.

I'm sorry you had this experience. I also hope that any research and awareness has an impact outside of Covid - it would honestly be quite a travesty if it does not.

I know some hope that additional research will be funded to help them cope with their conditions as well. I guess it depends on how you look at it really, personally I think that's a bit optimistic but happy to be proven wrong.

I’m hoping that long covid will encourage people/medics to take Chronic fatigue more seriously and not label sufferers hypochondriacs or malingerers or mentally Ill. I have chronic fatigue as part of a genetic condition and that aspect of it isn’t given much attention . For me it’s the worst part - paying for normal activity with a period of total exhaustion and needing a day or more to recover from it.

OP is right to point out the inconsistencies.

I had a friend who developed CFS after glandular fever. Worked with two girls who had it also when I was a student. They were all incredibly motivated, resilient, positive people and it was just awful to see the struggle they had to do sometimes just the bare minimum, and to hear about the total lack of support they received from medical professionals, and the shitty, judgemental way that others treated them as a result of their condition.

@Gothichouse40

I have an autoimmune condition, I was dismissed for years with my symptoms and at times they were very debilitating. My condition is not taken seriously at all. Good luck to those with Long Covid who need to see a specialist. I hope they get treated better than I did. Im sorry Long Covid sufferers have their awful illness, but the one thing I do hope for is perhaps doctors will actually listen to people, take them seriously and try and obtain proper treatment for them. I also hope it leads to more research in general, into debilitating, chronic illness.

Same here. I have thyroid disease, which is very debilitating, poorly treated and generally seen as a bit of a joke by many, as if we use it as an excuse for being overweight and tired all the time. Having had glandular fever as a teen I was at higher risk of autoimmune thyroid disease, but nobody calls it Long Glandular Fever, it’s just “take this pill and get on with it” even though “this pill” is a pile of crap.

I’m totally with you OP, and as much as this past year has been hard for many, I feel like it should have been a great leveller too. It’s hopefully given more people an insight into relying on government help when the chips are down (but of course those claiming furlough and grants won’t equate that with benefits!), has given many people more of an insight into the fear that those with compromised immune systems live with all the time. And this Long Covid should mean that more people understand what it’s like living with chronic illness. But sadly I fear thyroid disease especially will still be mock-worthy to some.

I am not sure that one really relates to the other though. Like, do you want people to be less sympathetic to long COVID?

It might be a thing that leads to a change in the treatment of CFS, ME and PVS. I do understand what you mean, it's been easily ignored for years but now the media is interested.

Yep, I have fibro amongst other things. I've had people tell me fibro isn't real, it's all in my head. My doctors consider my fibro a post viral illness, triggered by my second bout of shingles. But plenty of people tell me I'm fine, I don't look sick, no such thing as fibro, maybe I'm just lazy.

Yet long covid is a post viral illness, with symptoms very similar to fibro. I wonder how many people diagnosed with long covid will go through the same doubt and judgement

@Draculaswedding I have absolutely no hope for this, because it seems to always be about the economy. Maybe I’m just too cynical. I have autoimmune conditions that cause severe fatigue but not ME/CFS itself, and in a way, I know I’m “lucky” because my conditions can be “seen” on several medical tests so I don’t have to deal with being disbelieved at this point.

But I suspect that once long COVID really starts having a serious measured economic cost, with a certain amount of people unable to work for perhaps a long time, and some unable to work ever again, or trying to get PIP and other support for it, then it’s REALLY going to come down, and we’re going to start hearing things like:

• “it’s real, but people should be over it by X amount of time”
• “it’s not real; it’s always been something else (something else we don’t want to pay for ME/CFS)”
• “it’s real, it may last for an undetermined amount of time, but it has very specific symptoms, and while difficult, they’re not completely debilitating”
• “it’s real but does not cause half the symptoms people claim and none of them are debilitating”

So in essence, the same shite excuses people with ME/CFS, or post-viral syndrome, or fibromyalgia (which also starts often after a virus) already have to hear too often…

I'd like to think that Long Covid may result in more awareness of other conditions, but so far I've seen a lot of Long Covid in the media and very little of "perhaps this should be an opportunity to work to increase understanding of other chronic debilitating conditions". Perhaps it will come in time.

I can see how it can feel like a smack in the face to people who have struggled with Me/CFS for years and have been left to just get on with it. Suddenly people are starting to take notice and throwing money at research for this new chronic condition that appears to be very similar to ME, while ME sufferers have been ignored and disbelieved by medical professionals for years.

RightYesButNo I suspect you’re right unfortunately. I get referrals to occupational therapy, orthopaedics, physio and get X-rays to look at various areas of concern but no recommendations or recognition for the total exhaustion that accompanies the physical issues that make up the condition I have. It just doesn’t seem to be of importance to the HCP s who I see. They’re all over it with scans, different pain medication and surgery but the fatigue no one seems bothered about.

I'll be honest I've struggled with this. I've had ME for over 15 years, took 7years before diagnosis. I still rarely discuss it with anyone because I find the stigma too hard. I've had appalling treatment from doctors and medical professionals and my mental health as a teen was shot to pieces because I was suffering so badly without any support. It was a result of glandular fever.

Its not that I don't have empathy for people suffering from long covid - I really do because it's shit! I wouldn't wish it on my worst enemy. But I get really angry and frustrated at the "but but but long covid" brigade because NOBODY gave a flying rats arse about me, or about the thousands of other teenagers getting glandular fever every year.
When I read stuff about people getting compensation for long covid, or disability benefits etc I just want to shout "but what about me?!" I've never had access to any of that.

Anyway rant over. I'm very sorry to anyone who is suffering. You have my utter sympathy. But I just wish people would consider others who don't suffer from such a 'news worthy' illness.

Jourdain oh absolutely you won't see it in the headlines but links will be made by 'boring' research.

OP I've been wanting to start a thread exactly like this for ages! It's so bad how ME, CFS etc. have literally been ignored for years and sufferers treated appallingly but as soon as COVID is attached to it it's seemingly the worst thing in the world and promises around research/funding (which is doubtful).

Unfortunately any virus can lead to these types of illness and its only now its COVID its seemingly being taken seriously - the god damn hipocrasy is startling.

@Alannawhorideslikeaman

I'll be honest I've struggled with this. I've had ME for over 15 years, took 7years before diagnosis. I still rarely discuss it with anyone because I find the stigma too hard. I've had appalling treatment from doctors and medical professionals and my mental health as a teen was shot to pieces because I was suffering so badly without any support. It was a result of glandular fever.

Its not that I don't have empathy for people suffering from long covid - I really do because it's shit! I wouldn't wish it on my worst enemy. But I get really angry and frustrated at the "but but but long covid" brigade because NOBODY gave a flying rats arse about me, or about the thousands of other teenagers getting glandular fever every year.
When I read stuff about people getting compensation for long covid, or disability benefits etc I just want to shout "but what about me?!" I've never had access to any of that.

Anyway rant over. I'm very sorry to anyone who is suffering. You have my utter sympathy. But I just wish people would consider others who don't suffer from such a 'news worthy' illness.

All of this, right here. I know someone who hasn’t been able to work for years due to ME. Can she get any benefits? Not a fucking penny. No one takes it seriously.

I have CFS, Fibromyalgia and Crohn’s disease. I don’t feel anything but sympathy for long covid sufferers. I don’t feel like the narrative is that it’s worse/never been seen before, simply that it’s new with different but related issues than other PVFS issues.

I get where you are coming from but also feel this is all so new people are panicked by it. They are not therefore thinking about much else.

Yanbu. I don’t understand why it has even been called ‘long covid’. It is simply post viral ME/ CFS.

ME ruined my life and I've had to repeatedly suffer the indignity of people trying to tell me it's not real or it's a mental illness. I feel very bad for the people suffering from "long Covid," but I don't believe it is a different thing in itself, I believe it's ME. In some ways if I'm honest, I feel bitter that suddenly people are paying attention, whereas no one really cared about ME patients much in the past. But I do feel deeply for anyone who's newly experiencing the symptoms and I am really hoping that more effort will be put into finding out how post viral fatigue really works and discovering some kind of treatment one day, hopefully in my life time.