The long covid sink hole

@ArseInTheCoOpWindow As I said, you are posting as if you know the cause and cure of ME/CFS. You don’t, nobody does.

CFS Clinics (there’s a difference between CF and CFS too) support people with ME/CFS to manage and live with their illness. CBT is often offered at these clinics NOT as a way to “cure” the ME , but to help the sufferer manage negative cycles of thought around living with their illness. They do NOT explain the cause or cure of ME because nobody knows what that is?!

It is true of ANY illness that there will be ones who are stuck in a negative cycle of thought that hinders recovery . However, to suggest that ME sufferers could get better if they just tried harder to calm their nervous system, is just not ok.

You are telling another poster who is questioning you, as if it were scientific facts that the brain is in a freeze mode and is therefore causing neurological symptoms! It is so far from the hypothesis of actual experts in the field, that I have queried it.

It is harmful misinformation and feeds directly in to the people who believe anyone with such diseases is just not trying hard enough.

I'm the type of person who is so reluctant to cause a fuss that I nearly died from internal bleeding but was insisting I was fine, it's just a bit of cramping until I nearly collapsed. When I was in labour with my 2nd the midwife asked me why I was there as from looking at me I was obviously just in early labour. I knew I wasn't as I was in agony and insisted that they checked me, when they eventually agreed I was 8cm dilated. My husband says I'm like a cat, I remain calm and composed on the outside even when I'm screaming with pain on the inside. It didn't stop me from getting one of these 'conditions'. Unfortunately they don't discriminate and even people who think they are hard as nails can find themselves exhausted and gasping for breath just doing housework.

I've had Long Covid for 4 years. Luckily I've started recovering in the last year to the point where I'm not crashing with PEM and have returned to work. I still have to be careful and listen to my body. Dysautonomia and breathing pattern disorders are very real and disabling.
I got very little from the medical profession but learned lots from the LC community you are disparaging. There are a lot of medical researchers in these groups who are sharing information about treatment trials.
LC is not one disease and there is no one treatment that will work for everyone. I tried lots of the suggested treatments and found the ones that worked for me. I'm about 75% recovered but don't know if I'll improve further.
The impact of LC on my life has been immense so the OP is being very very unreasonable.

No I’m not.

I’ll post how and want.

I’ve had severe CF. Unable to get to bathroom for 2 years. Why would l stigmatise anyone?

Where have l got the info from?

Some from the Chronic Fatigue Clinic
Some from the Long Covid hub OT.
Both of which were NHS referrals

l haven’t just made it up.

@ArseInTheCoOpWindow I have logged in simply to respond because I could not stomach any more of your posts on this thread! Where on earth have you sourced your information relating to ME/CFS /LC?! All of this stuff about the brain being in “freeze” mode and that the nervous system just needs to be calmed and sufferers have to “want to do it” and things will be fine; you are spouting this as if it is factual information, and not your opinion. It is harmful and just feeds the stigma real sufferers face.

YOU may have sound something that worked for YOUR illness, but if what you are saying is even remotely true, why hasn’t the NHS picked up on this miracle cure?! Because it’s nonsense.

Please at least pre face your posts with “in my experience or in my opinion”; you are posting as if you have found the cause and cure of ME/LC. Meditation is NOT a cornerstone of treatment and to suggest it is, is downright insulting to those of us who have lost everything to such diseases.

This is so sad to read. I had long COVID from the March 2020 wave. It was the worst experience and I was very unwell for about 18 months, then slowly improved. I seem totally normal now, but I've never got back to the same level of energy/fitness/stamina.

I've no idea what led me to recover, while others struggle badly for years, because no one studied long covid properly, no one gave a shit and I expect most of my friends, colleagues, doctors probably thought I was making it up.

I don't mention it in real life because of the shitty opinions of others, but my heart goes out to anyone who finds themselves in this situation.

I bet. Hope you're on the mend?

Indeed.

They affect women mainly. Who have over reactive nervous systems. Tend to affect people with allergies.

Lets home you’re not a menopausal female with hay fever eh?

This being true for you doesn’t mean it’s untrue for others. You mustn’t take people’s observations of some lead swingers as being targeted at you. It isn’t, you are genuinely ill. Not everyone who appears to be or claims to be, is.

I was left with a racing heartbeat after a bout of COVID and I started to wonder if I was stuck in fight or flight mode as I noticed I felt anxious about things I would usually take in my stride. It wasn't clear whether I had a physical problem or something else..

The racing heartbeat was very real and physical and one of my friends commented that she noticed me struggling with a walk I would usually easily manage.

Before I went down the route of asking to have my heart checked I visited someone who works with the vagus nerve. The heart rate readouts from walking to my appointment compared with walking home were like night and day and I went completely back to normal after that one session.

It was all very peculiar and I could imagine spending years backwards and forwards to appointments if I hadn't happened on the right modality as soon as I realised whatever was up wasn't fixing itself.

That comes across as quite harsh. But interesting that there is evidence now that a proportion of those with long Covid also have or have had ME or Fibromyalgia. I think someone here even mentioned it was their experience

YABVVU. Your poor brother. I had LC for over a year in 2020 and was gaslit by everyone including many friends and also doctors who told me it was "anxiety". Just because doctors didnt find anything obvious does not mean he's making it up FFS. I also gained a lot of invaluable support and info from the online communities.

Yes, I agree. A lot of these ‘conditions’ seem to affect very similar types of people. There is a type who seems to relish in being unwell and misunderstood.

I was too unwell to attend any appointments. That’s not fun.

Because... and I have witnessed this... its all they have.
Its important- all those appointments and people being concerned... its a need in SOME people - a MH issue.

The deregulation of the nervous system puts the body into fight or flight mode. The brain doesn’t understand the difference between a real threat and a dysregulated threat and freezes.

Why do you think meditation is a cornerstone of LC recovery?. It soothes the nervous system.

Exactly. And I think the way in which some people are being so dismissive of Long Covid is just as offensive as it would be if I was to say that autism doesn’t exist. Just because I haven’t had any direct experience of autism doesn’t mean that it isn’t very very real and hard to manage to those people it impacts.

Covid is still here and people are being regularly reinfected. Unfortunately every reinfection raises the risk of complications and long covid. Some people on here are going to get a very nasty shock one day if they become ill and the ignorant cruelty they showed to others is turned on them.

They are trauma response. But they set up a neurological problwm. Remember in LC the nervous system gets dysregulated.

The brain thinks there’s a problem. I think there are some neurological markers now?

But you said it was part of fight flight or freeze which are trauma responses.

Or are inflammatory markers found when tested for if it is a neuroinflammatory rewsponse? I'm not understanding this very well

You can’t. Because you don’t always know how to. I was bedbound for 2 years. NHS useless. I didn’t know how to change my response.

It took 2 years to find something.

In short it’s not easy but you can only change yourself and your response - so it is that easy ( can be hard if you love someone )

Yeah it’s that easy. It really is🙄

Absolutely this. Brain fog is real - I've had it as a symptom of post concussion syndrome. It felt like my head was full of concrete and pressure. My thinking became very slow as though my thoughts slowed down and it was like there was something physically stopping the thoughts/neurons firing (ie inflammation).

Perhaps people who are so dismissive should try living with these symptoms for a week then they would soon be more understanding.