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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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

112 replies

Jourdain11 · 14/06/2021 23:25

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

OP posts:

CiaoForNiao · 15/06/2021 02:03

Yanbu.
The same is true of mental health issues. I've have severe depression/anxiety for years. Always been told to "get over it" "stop being silly" "mind over matter" etc etc. Yet those same people suddenly want my sympathy that they are depressed/anxious after the last 18 months.
And they have my sympathy. They do. Because its shit. But an apology that they didn't understand how hard it was for me BC (Before covid) wouldn't go amiss.

Oblomov21 · 15/06/2021 02:10

I understand this. The treatment of those with ME and similar has been shocking for years.

spotcheck · 15/06/2021 02:16

I think there definitely needs to be more awareness/ understanding of the conditions you highlight OP

But.....

I think Long Covid is scary because we truly don't know the impact it will have. ME/CF etc- we know a fair deal about it. Long Covid, not so much.

MyDcAreMarvel · 15/06/2021 02:18

@EKGEMS in the US it’s not difficult to find a physician that will tell you what you want to hear, that doesn’t make it true. It’s not medically possible for any vaccine to cause long Covid. Your medically records will not show that you had Covid if you never had a test at the right time.

MiddleParking · 15/06/2021 05:50

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

icedancerlenny · 15/06/2021 06:05

I agree to a certain extent.

I had glandular fever at 22 and then had post viral fatigue / ME, diagnosed with fibromyalgia and then MS, which is now known to be linked to the Epstein Barr virus.

I think people should be aware that any virus can cause long term issues but maybe this will help other sufferers who have been ignored. (I wasn’t ignored actually, but obviously treatment got much better once I was diagnosed with MS)

Pinchoftums · 15/06/2021 06:06

There is a difference between the two in that Long covid can either be a post viral fatigue that turns into ME or it can cause physiological damage to organs that can be seen (via scans) such as a damage to the heart or kidneys. Or measurable differences such as lung function tests. I wonder if people who are "just" fatigued with LC are being robbed off.

I had ME for about 4 years and it is devastating. It hurts my heart to think of lots of news people going through the heartache I did. Lost my job, couldn't barely walk, still am weaker 19 years on.

Pinchoftums · 15/06/2021 06:07

Fobbed off not robbed off

Cattitudes · 15/06/2021 06:22

Hopefully it will be a bit like coeliac and gluten free food. I tested negative for coeliac (though now know it could be as only tested for one type of antibody). Gluten does horrendous things to me though and I choose not to eat it, I am probably stricter than some with coeliac. Some people with coeliac bemoan the rise of the gluten free non coeliac diet, and I can see why as some only adopt the diet inconsistently, however this has meant that there is more and cheaper gluten free food than ever before.

Hopefully the same will happen with CFS/ME etc. More research will shed light on why some people get it and others don't. New drugs and treatments will be developed. The scale of the need will help to bring down the cost. There will be comparison studies with CFS and ME patients as other groups. There will be overlaps and sadly in a few years time we will all know more people with chronic illness, raising the profile.

I actually think that solidarity with others would be a better strategy. Those with other long term conditions reaching out to those with long covid, being repositories of ideas and support. Yes I know how hard it can be to do that with your own long term conditions but resentment, although understandable, won't help.

PurpleFlower1983 · 15/06/2021 06:55

I think it’s a positive change as it’s highlighted CFS etc. and perhaps clarified some people’s understanding of those kind of illnesses in a way that can be understood.

justanotherneighinparadise · 15/06/2021 06:59

You’re not wrong! I had long lasting issues from a nasty virus I caught in my teens. Dragged out abd helped decimate my twenties too. Zero interest from doctors.

Sirzy · 15/06/2021 07:16

I have CFS since having glandular fever as a teen. Personally my concern about covid on a personal level has always been what catching it would do to that side of things.

I think the fact their is now more dialogue around such issues and the long term effect of viruses is a positive

MaxNormal · 15/06/2021 07:23

Totally OP. There's been a bit of bitterness on my group at how much acknowledgement and resources there seems to be for it when we're disbelieved by many doctors and left to struggle alone for years.
We're a group of people injured by a particular medication.

PerseverancePays · 15/06/2021 07:25

I bet a lot more research money will be found to understand post viral fatigue because as many men as women have developed long Covid and as we all know , men have Very Important Jobs.
All that ME, Fibromyalgia, Thyroid issues, CFS etc, mostly affects women so no need to bother much when we can just offer them anti depressants and move on, job done.
Bitter? Not me , no.

Permanentlytiredout · 15/06/2021 07:31

I can see both sides of this as I have had an autoimmune condition (ME/CFS) for over 20 years and I also have Long Covid.

I completely agree that autoimmune conditions have always been swept under the carpet and seen as malingering in my experience. Long Covid is getting a lot more attention and publicity.

However, my Long Covid absolutely shits all over the past 20 years with CFS. It is debilitating like nothing else I have experienced. Not everybody will be experiencing it the same way (some have milder cases than me, some a lot worse) and I guess the same is true of CFS too. But oh my God, I am so unwell with this beast and it feels never ending. That’s just my experience thought and I don’t want to sound like I’m playing chronic condition too trumps.

However, it on my experience even though long covid clinics have been set up, very little help and support it actually being given. Basic medical tests are performed but the more complex or unusual tests that have been done on the study group of 100 which have revealed more difficult to find heart damage or microscopic clots on the lungs are not being done because it’s too expensive. So we are just getting a basic chest scan and being told it’s all clear when further investigations are likely to find issues. There’s also an attitude from the general public that it’s a made up illness. It isn’t. In this way it feels like we haven’t come any further re: this even though a large amount of people have this condition.

InTheDrunkTank · 15/06/2021 07:34

I think you're right OP. It just illustrated how selfish we are when it comes to fear. I know a few people suffering from long covid and it does scare me as I'm all too aware it could be me (the three I know, two suffering quite seriously, are all young and previously very fit and healthy). The other illness you describe are more theoretical to me emotionally. I think you raise a good point and we do need to adjust our thinking beyond what we see immediately in front of us, or what affects us personally.

Lostlemuria · 15/06/2021 07:38

I’m not sure that anything will improve, I have RA and I haven’t seen a rheumatologist for over 18 months. My GP has written asking for an appointment but it’s unlikely I will get one for a least a year due to the Covid backlog. My medication is no longer effective and I am losing mobility fast due to the joints in my feet disintegrating but the NHS don’t want to know. I have private health insurance through work but chronic illness isn’t covered and the drugs I need can’t be prescribed privately in the UK. So I will continue suffering on. It’s not about recognition of my illness, it’s about money and resources which aren’t there for this condition as it mainly affects older ‘non-productive people’, especially in my area of the country. I’m relatively young, work full time and also care for my primary aged autistic child. I’m also high rate tax payer but the health service don’t deem me in need of effective treatment. Good luck to all those suffering.

HeyDuggeesCakeBadge · 15/06/2021 07:42

Does anyone know the statistics for post viral illnesses v's the statistics for long covid? I'm just wondering if it is more likely to get long covid than ME/CFS as a result of a virus not connected to covid?

nether · 15/06/2021 07:45

I think you're absolutely right, and that there is a distinct lack of sympathy and that it is highly inconsistent.

I can't help being struck by those who say it is terrible that people will die from cancer because of covid disruption to services, but if that same person had been diagnosed just before the pandemic they would be CEV and in all too many posts written off as 'going to die soon anyway'

Original poster

Jourdain11 · 15/06/2021 08:09

@HeyDuggeesCakeBadge

From the studies I'm aware of... No, the incidence is not higher but, since it's a novel virus, obviously more people are getting the virus and subsequently, more people are getting post-viral syndromes.

OP posts:

Original poster

Jourdain11 · 15/06/2021 08:11

There is a difference between the two in that Long covid can either be a post viral fatigue that turns into ME or it can cause physiological damage to organs that can be seen (via scans) such as a damage to the heart or kidneys. Or measurable differences such as lung function tests.
But this can occur after other illnesses also. I know somebody who experienced similar after viral pneumonia ca. 10 years ago.

OP posts:

Original poster

Jourdain11 · 15/06/2021 08:17

@nether

I think you're absolutely right, and that there is a distinct lack of sympathy and that it is highly inconsistent.

True! I was actually diagnosed with AML about 2 weeks into Lockdown 1 and have spent pretty much the whole pandemic being newly clinically-vulnerable, due to the cancer itself, the chemo and having my spleen removed early on due to complications. It was very interesting how many people we're happy to write me off as "going to die soon" - my doctors thankfully did not agree

OP posts:

InnaBun · 15/06/2021 08:17

I know what you mean. We have to fight so hard to get anyone to understand but as soon as long covid comes along it's very quickly identified as a thing and treatment plans created. It makes sense it is a priority right now as it's new I guess. Hopefully some of the strategies will lead to better treatment and understanding for all.

TheSunShinesBright · 15/06/2021 08:22

Science. If it’s not measurable, it doesn’t exist OP. Apparently.

deepbreath · 15/06/2021 08:22

YANBU. I had ME in my teens that began after having the flu. I now have a diagnosis of CFS and Fibromyalgia. I had hoped that some joined up thinking could be used, as all those poor people have the same issues that scores of people have had with CFS/ME/Fibro etc. for years, but no - if your symptoms didn't start because you had Covid, it doesn't count. More crucially, you cannot access the medical help that long Covid patients have.

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