...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

Do less than you think you should, would be my advice.

I’ve been saying this for ages. I had ME for years and no one gave a fuck. Back when it was yuppie flu. And now all of a sudden it’s ‘real’. Like the people who’ve been suffering for years prior to this are suddenly believed. I’ve worried about having a relapse for years, even though I’ve never had one. So long covid doesn’t bother me in particular, because I’ve live with that kind of worry for so long that it feels like old news to worry about a virus.

The only sad thing is I Can see the special clinics,physio support will be “Covid only” and you will end up with two tier same as before. One for support and assistance and research and …. Timber weed.

Long Covid will become just another name for 'middleaged woman that feels like crap' because it doesn't affect as many men, apparently. So no, it won't cause a complete about-face in the treatment of other, stereotypically female chronic conditions like Fibromyalgia, CFS and ME. There will be an initial peak of interest and research whilst there are men suffering from it, but once the vaccines become a regular thing, those already with it will become invisible other when being told every symptom is 'You have to get used to the idea of things being painful/exhausting/whatever' or 'you're probably perimenopausal'.

Sometimes I am so bloody grateful that my chronic autoimmune disease shows up in scans, x-rays and blood tests and my genetic condition is unequivocal when performing standardised assessments, as had I not got the diagnosis (which took the best part of 40 years, as I've had plenty of 'have you considered that you might be depressed?' and 'have you heard of this thing called fibromyalgia?' since becoming an adult, I'm sure my symptoms would also be dismissed as as 'well, you were ill last March, it's probably Long Covid'.

That's my expectation @NeverDropYourMoonCup.

I think it’s like many things, not taken seriously until a chunk of the population who have voting power are suddenly disabled by it. See also school meals and furlough payments.

I agree mooncup

I'm glad I started this thread, although I dithered about it as I really didn't want to offend any Long Covid sufferers (was not my intention at all to minimise what they're going through). Sadly, I think it's easier for me - as someone who doesn't have a chronic post viral / functional condition - to raise this. And that shouldn't be the case!

I was having a conversation with my GP today re the links between mental and physical health. This was going back to when I was diagnosed with leukaemia more than a year ago and the first GP I saw (or rather spoke to on the phone) said that it was "just anxiety". Thank God I sought a second opinion, because if I'd delayed longer it could have led to a different outcome. But it's very common, it seems, for women in their 20s and 30s to be dismissed as neurotic malingerers.

I said - and my GP agreed - that sadly the "mental-physical health link" is often only viewed from one angle: you have a mental health condition and therefore you're experiencing/imagining physical symptoms. Nobody ever seems to consider that you might be having physical symptoms that make you feel like shit, and this is causing you to feel depressed/anxious!

Not sure if I'm making any sense, though!

@MiddleParking

I wouldn’t worry about that being the narrative, the phrase ‘long Covid’ elicits its fair share of eye rolls.

I agree with this. I have seen A LOT of virtual eye rolling and saying it is no different than other post viral illness . The thing is that may be true but the issue is the sheer number of people suffering from this at the same time is probably unprecedented, at least in that we now know about it . I imagine in past viral epidemics/ pandemics there were many recovered people with post viral syndromes just it wasn't labelled as such and people accepted that for some people some illnesses ruined their long term health

Whether the better knowledge about this along with so many people suffering from it at the same time ends in proper research into the condition with good treatment or whether we just add long Covid sufferers in with ME/CFS sufferers and dismiss them with its all psychological , hysterical, etc is to be seen

I have a fear it will be the latter. For some reason people tend to judge those who suffer from long term poorly explained chronic conditions as malingerers, hypochondriacs etc. Sympathy is always saved for those with clearly defined, categorised and named illnesses. Everything else tends to be dismissed

I think a contributing factor as to why this sort of illness is dismissed is also that it tends to disproportionately affect women

So op I'd say it would be better in terms of getting real help for your illness if people do make a fuss about Long Covid galling as I can see that might be for you.

Surely people who suffered dismissal of their conditions don't want others to go through the same?

It's not ok for anyone's condition to be dismissed or downplayed or denied.

It's already happening. Long Covid sufferers are having their symptoms dismissed by doctors.

Of course, it's important to note that Long Covid is not the same as CFS or ME or PVS Unsurprisingly, since it's linked to not only a new disease but one that might be genetically modified and escaped from a lab.

Long Covid can cause heart, lung, kidney, and brain damage, trigger diabetes, hearing loss.

A silver lining would be if it motivated more research on those other conditions too - maybe some of the same treatments will help?

The reason why Long Covid has had (some limited attention) isn't because it's seen as more 'deserving' or 'real'. It's because many of those suffering are HCP. And even they're facing a battle to get taken seriously. A group of doctors had to write to the British Medical Journal a while back. Their colleagues were discussing their symptoms.

The other reason it's had publicity is sheer numbers at the same time. The government is worried about the financial implications - cost to the NHS and lots of people unable to work and needing sickness benefits. It's not because they 'care more' about it.

On the one hand I find the whole "we've never seen anything like this before" narrative deeply offensive and minimising to people with ME/CFS who have lived for decades having their level of disability dismissed and mocked. DD has had moderate-severe ME since she was 14 and it was life-changing and hugely distressing. She hasn't been to school since Y9, has lost touch with all her friends who have now left for university, and has spent every single day since 14 feeling like she's had chemo.

On the other hand she got Covid last year and the level of disability and the dismal quality of life she now leads ways outstrips that of the previous 4 years. Covid has left her bedbound (which I appreciate many people with severe ME are too), we've spent thousands on private consultants and she's collecting new diagnoses and medical conditions like Pokemon. On top of that she now has severe depression, severe PTSD from chronic illness and severe anxiety.

What she's experiencing now is not ME and I'll die on that hill. She has symptoms that she never had with ME. I've seen people with ME for decades with so much more resilience than the Long Covid cohort in the past year. DD's psychiatrist tells me that Covid gets into the brain and cause neurological damage and this fits completely with our experience. So I do sympathise with people with Long Covid who don't want to get consigned to having ME and left to rot.

I firmly believe that we will find out that many of the conditions caused by Covid will end up being being what ME is. Not that Long Covid is ME, but the other way round. I truly believe it will bring more answers about ME. I worry though that it will never get discovered on the NHS and only people who can access private healthcare will get the level of investigations they need.

@CausingChaos2 It isn’t though? I had covid back in March 2020, since then I’m gradually getting better (very very slowly) but the symptoms I and many others have stents like CF etc, I’ve developed more of an Mcas condition and all kinds of debilitating symptoms. It isn’t the same thing. Please research it more before just throwing statements out there.

@BonnesVacances You’re exactly right.

So sorry to hear about your daughter, it’s so unfair.

I agree so so so much with this it hurts. I have had M.E/post viral fatigue. I have been told it wasn’t as bad as long COVID, even though I couldn’t walk up the stairs. I have been told I was depressed when all I wanted to do was live. I was told by doctors that being 6 stone is normal. That throwing up every evening was normal. Going dizzy when I stand up was because I was 17. Students used to say how lucky I was to go home early (after I was much much better and I only went in for two half days anyway) . I’m very good at masking the fatigue. I’m very good at pushing through. For people to tell me that long COVID is so completely different and it’s more severe just invalidates everything I went through. I used to lie in bed and the room would spin, I used to go up three steps at a time over the span of half an hour, only to get stuck and fall asleep three steps from the top. I. Couldn’t. Do. Anything. No one even believed me.

Why do people with MS get treated differently tO people with fibro/Me/CFS?

@BonnesVacances

On the one hand I find the whole "we've never seen anything like this before" narrative deeply offensive and minimising to people with ME/CFS who have lived for decades having their level of disability dismissed and mocked. DD has had moderate-severe ME since she was 14 and it was life-changing and hugely distressing. She hasn't been to school since Y9, has lost touch with all her friends who have now left for university, and has spent every single day since 14 feeling like she's had chemo.

On the other hand she got Covid last year and the level of disability and the dismal quality of life she now leads ways outstrips that of the previous 4 years. Covid has left her bedbound (which I appreciate many people with severe ME are too), we've spent thousands on private consultants and she's collecting new diagnoses and medical conditions like Pokemon. On top of that she now has severe depression, severe PTSD from chronic illness and severe anxiety.

What she's experiencing now is not ME and I'll die on that hill. She has symptoms that she never had with ME. I've seen people with ME for decades with so much more resilience than the Long Covid cohort in the past year. DD's psychiatrist tells me that Covid gets into the brain and cause neurological damage and this fits completely with our experience. So I do sympathise with people with Long Covid who don't want to get consigned to having ME and left to rot.

I firmly believe that we will find out that many of the conditions caused by Covid will end up being being what ME is. Not that Long Covid is ME, but the other way round. I truly believe it will bring more answers about ME. I worry though that it will never get discovered on the NHS and only people who can access private healthcare will get the level of investigations they need.

For what it’s worth, I have a friend with long COVID who is able to do far more than I ever could with M.E. I also needed a neurologist to get any help at all because it did affect me neurologically. The problem with M.E is that it’s not always just after glandular fever, they still don’t know what mine is from. I really hope that the research will help us all. Im 23 so if your daughter would like anyone to talk to that has experienced this young (got sick at 17) then I am more than willing if you’d like to DM me. It’s an isolating illness. Best of luck to her, I’m so sorry she’s struggling so much.

“ Long Covid can cause heart, lung, kidney, and brain damage, trigger diabetes, hearing loss. ”

My brother has all those, apart from brain damage (as far as doctors are aware) as a result of a virus he had a decade ago. He also has vision problems. Another relative developed a squint after chicken pox. And another a Bell’s palsy and memory loss episodes following an unknown virus.

This isn’t to minimise long covid, nor the fact that given sheer numbers of infections we are going to unfortunately have a high number of post viral complications, but just to say that if these conditions being triggered by a virus are a surprise to you then you are quite lucky.

Like somebody said, Long Covid seems to be an umbrella term - applied to post-viral fatigue symptoms, but also things like triggered autoimmune and short term/long term organ damage - which can and do occur after other viral and bacterial infections.

I have post viral fatigue following glandular fever 2 years ago. The enduring brain fog, muscle aches and fatigue is indescribable. I really feel for long covid sufferers. Whilst I feel sad that there are so many of us with chronic post-viral complications, I am quite cheered to find so many of us in one place.

@ikeepseeingit

I agree so so so much with this it hurts. I have had M.E/post viral fatigue. I have been told it wasn’t as bad as long COVID, even though I couldn’t walk up the stairs. I have been told I was depressed when all I wanted to do was live. I was told by doctors that being 6 stone is normal. That throwing up every evening was normal. Going dizzy when I stand up was because I was 17. Students used to say how lucky I was to go home early (after I was much much better and I only went in for two half days anyway) . I’m very good at masking the fatigue. I’m very good at pushing through. For people to tell me that long COVID is so completely different and it’s more severe just invalidates everything I went through. I used to lie in bed and the room would spin, I used to go up three steps at a time over the span of half an hour, only to get stuck and fall asleep three steps from the top. I. Couldn’t. Do. Anything. No one even believed me.

This sounds so difficult. So much of your post doesn't sound like ME. It sounds like dysautonomia and gut issues, possibly related to MCAS. This is what I mean about finding out that Long Covid conditions that have hitherto been lumped under ME may well come to bear as other conditions with treatment and medication.

@RightYesButNo I absolutely agree with you and i have said before that the Gov media etc are very happy to use those with Long Covid to emotionally blackmail and frighten the rest of the public with now by saying how serious it is, but as soon as they apply for disability benefits it will turn on a hair and not be serious enough to warrant PIP.

As an ME sufferer yes I do. At first I had sympathy but now finding myself at people complaining they’ve suffered symptoms for a few years as opposed to my many years.

Also a bit pissed off that it’s getting so much notoriety. Those of us with ME have struggled to spread awareness and even to be taken seriously.

Ive had cfs for at least 25yrs and im resigned to the fact that no one gives a shit ,it took me ten years to get a diagnosis , most of the time i look ok ,when i dont look ok no one sees me as i stay home alone for weeks on end , seriously ,no one cares ,get used to it ,i have .

@BonnesVacances That's not one anyone has actually ever suggested to me before! Thankfully the neurologist that we saw came recommended to us because his daughter had a diagnosis of M.E, so he understood where I was coming from. I had (still have) what turns out to be an unusual and severe form of daily persistent silent migraines, along with POTS and some of it being post-viral fatigue in the most basic sense. Basically, the migraines were attacking everything in my body, a complete neurological storm every day. I'm still not 100% I don't think I ever will be, but he basically saved my life. I work now, I walk up my stairs in one go and I can hold a conversation. I have no doubt that if I had been left on the NHS system (where he had a five-year waitlist) I would still be that sick. I'm incredibly lucky I was young enough to be under my dad's insurance and lucky that he could even find what was wrong with me. I really do feel for your daughter, it's such a terrible thing to have to endure. The NHS didn't even offer me appointments aside from a diagnosis which was a series of tick boxes. They never even took a stool sample. So much they didn't do. Your daughter is lucky to have you advocating and researching x

Thanks @ikeepseeingit and for your offer re DD. I'm convinced the majority of people with ME have MCAS or at the very least histamine intolerance which IMHO accounts for the migraines and the gut issues which are prevalent. And so are symptoms of dysautonomia. But once you get given a CFS/ME diagnosis, the doctors shrug their shoulders and stop looking for more answers.

We have found out more about underlying issues since she's had Long Covid. Not that doctors are any more interested and in our experience having Long Covid has led to the same ambivalence about a young person with abysmal quality of life. But it has exacerbated many conditions that we've realised were there all along and brought them to the fore. It's given us a lot more to go on and a direction to follow re private consultants. And we are getting answers we had never found before because we weren't looking in the right place.

This is where I truly believe that the focus on Long Covid will benefit people with ME. Many of the ME charities are trying to align the narrative and jump on the coat tails of all the Long Covid focus. It's a hard line to walk though as it upsets people with ME that these charities are turning their heads towards Long Covid but it helps to validate the experience of people with ME and for them to say they've been living with it too. It's hard to get the right balance with the messaging.