...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 can see how it’s super annoying for CfS/ME sufferers to have been ignored for so long and now it’s COVID it’s all hot property - but - hopefully now people will be getting help and there will be research and better treatment and understanding? Once can hope anyway.

I agree to an extent and take your point. Hopefully it will lead to better treatment for those with CFS/ME.

I do think, though Long Covid is a bit different to those conditions. There are a lot of similarities but different symptoms too. As a Long Covid sufferer as well as tiredness, dizziness, aching joints etc I also have continued SOB and need an inhaler also a raised HR and high blood pressure.

There is no treatment and the GP just says 'give it time'.

@Jourdain11 - I remember your post from last year wondering whether to seek medical help in the middle of Covid. I hope you're doing well?

@BonnesVacances Oh, that’s interesting! Would you think that me now having hay fever would point to that being the case? It has got better as I have got better, but it came on the summer after I got sick as well as travel sickness. I have never heard of this MCAS theory so it’s very interesting to me.

I wonder how many men , who go to a GP with the distressing symptoms of their autoimmune condition are asked why they are there and then handed a questionnaire for depression. That is what happened to me on one visit. If you think getting taken seriously while you are young is difficult, wait till you hit 50 and then grow a cloak of invisibility. I hope everyone here can get the help you need. Whether it be for Long Covid, ME,CFS or anything else. I gave up years ago and will not entertain a doctor unless I really have to. Ive just given up. I wouldn't wish illness on anyone.To those who are bitter, I feel your pain and anger. To those with Long Covid, Im sorry you got this hellish condition and hope things may improve for you all.

[quote ikeepseeingit]@BonnesVacances Oh, that’s interesting! Would you think that me now having hay fever would point to that being the case? It has got better as I have got better, but it came on the summer after I got sick as well as travel sickness. I have never heard of this MCAS theory so it’s very interesting to me.[/quote]

@ikeepseeingit I think having hayfever would at least give you cause to look into MCAS, yes. Unfortunately it's not easy though. There are only a handful of NHS consultants who get it and most people have to go private and it costs thousands for all the specialised tests and then GPs won't prescribe the medication so you have to pay for that too.

I'm sure you've done some research by now and can see if any of it resonates. I suspected it in my DD for years while she had ME but it was never concrete enough to warrant the cost of the investigations. Then she had the Covid vaccine in March and it set her off big time, and we've still not been able to settle the mast cells. We are now under an endocrinologist in London and have spent the best part of £4,000 on it.

There's a triad of conditions that a lot of people with ME seem to suffer from; MCAS, PoTs/dysautonomia and hypermobility which all seem to lead to gut dysmobility issues. My DD's cardiologist who we've been seeing for PoTS since DD got Covid last year says that he thinks she's had dysautonomia since 2016 when she was diagnosed with ME. She definitely had ME though in its truest sense of having exertion intolerance as we tested that with an exercise test, but she was in remission from that before she got Covid.

Gothichouse .

Which narrative though, OP? The one in the media? Because yes, nods to ME/CFS and related conditions have been few and far between and most journos don't seem to be making an effort to dig any deeper. But within the Long Covid "community" we're hat tipping those who have gone before us all the time!

One of the reasons people with LC seem to be getting better at a faster rate (despite the disabling co-morbidities that have been triggered, as mentioned above) is because of the wealth of information we've all had access to from very early on, thanks to the resources that were put together by those with ME/CFS and the (very few) doctors around the world who did always take it seriously. I managed to self-diagnose with POTS only two months after first falling ill. Two months! My GP hadn't heard of it. I had to repeatedly force the issue, which, a year on, has led to getting a proper test and diagnosis. But for those who contracted these kinds of illnesses in a time when information wasn't so freely available, it took years to get properly diagnosed. And if you're having to go years not knowing how to effectively manage something like that (things to do and things not to do), the prognosis is going to be worse. Greater information leads to greater autonomy in managing our own recovery, which is important in these kinds of illnesses when no one has a magic potion for us.

This is a really catastrophic illness to get, but we know our luck, to be getting it as a huge cohort of well publicised sufferers at a time when this information exists to anyone with an internet connection. But, please nobody minimise how hard this has been either. We had our own fair share of gaslighting, and being told dismissed as hypochondriacs when we couldn't breathe for months and our hearts were misfiring - there was no access to in-person medical care anyway, unless you were being rushed onto a ventilator. The first months were extremely frightening, not least because we couldn't even pretend the pandemic wasn't happening. There was no normality to take comfort in whatsoever. We're still having to learn how to navigate with hidden disabilities, which has come as a shock. And, newspaper articles or no, we're still facing misunderstanding/dismissal/disinterest from our friends/family. Away from the internet, it's still an incredibly isolating illness.

But research money is coming. That's wonderful. For anybody who thinks LC just = ME/CFS, that kind of research should be celebrated, since that knowledge will be directly applicable. And if we do eventually recover, it's a huge chunk of the population who have had their eyes opened, and will be motivated to help smooth the path for those who aren't so lucky.

MercyBooth Tue 15-Jun-21 22:29:55
@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"

And so it begins.
www.mirror.co.uk/news/uk-news/long-covid-sufferer-refused-disability-24611861

Well it's purely a numbers game

Post viral fatigue was always relatively small numbers - with the addition of Covid we're looking at hundreds of thousands right?

Dh had post viral fatigue /ME very seriously 20 years ago - had about 3 hours waking a day. He has been mostly recovered for about 15 years but sometimes the exhaustion hits him like a train and he sleeps 16 hours straight.

@MercyBooth Unfortunately, we’re way past the beginning and in the thick of it now. The DWP have refused to allow “long COVID”* guidance given to PIP and WCA accessors to be made public. A Freedom of Information Act was filed to get the information, and they didn’t meet the time limit. Here’s the article about that:
www.benefitsandwork.co.uk/news/4405-dwp-s-secret-long-covid-pip-and-wca-guidance

They were finally forced to release the accessor guidance due to the FOI Act request and they did on 13 July, according to this:
www.benefitsandwork.co.uk/news/4412-long-covid-pip-claims-supplement

(This website seems to sell membership so you can have their “guides,” which I don’t support at all. I’m sure now that an FOI has forced the PIP “long COVID” assessment info to be released, that some website that isn’t asking for payment must have it? Maybe I’m wrong. I’ve been trying to find it).

*FYI: I only put “long COVID” in quote marks to solve confusion. The disease is very real.
So. About the disease: “It was a “long COVID” assessment.”
Referencing regular COVID but something taking a while: “It was a long COVID assessment.”

Interesting. Thanks