The long covid sink hole

Hmmm a neuro inflammatory response. Doesnt need trauma.

If you don't understand what brain fog is, think yourself lucky.

Your brother is ill, and I think your attitude stinks.

Long Covid for most people has physical markers

some people have physical illnesses that drag them down

some have mental ones that drag them down

we can’t say what ops brother has- one or the other

we can say that for many illnesses, how you chose to live your life affects them

yes you can’t cure cancer by how you chose to live , but you do affect your chance of getting it by how you chose to live

how you recover from a broken leg -!how well you do the physio does affect how well you will be able to walk later

how you chose to react to mental health problems also affects your recovery.

we can just say “but they are ill” and excuse anything

or we can say “they are ill but they don’t help themselves and it’s pulling me down so I am going to walk away “

it’s hard sometimes to judge when people can’t help themselves but even then we don’t owe anyone anything just because they are ill

So it's a trauma response??

There sure is

I think she’s implying that he’s fabricating his illness. Many people do. it’s a psychiatric disorder, so maybe he’s not ‘malingering’ as you put it, maybe he has a psychiatric illness.

sabberkshirewest.co.uk/wp-content/uploads/2025/03/Fabricated-or-Induced-Illness-in-Adults-Learning-Brief-V.1.0.pdf

Cancer is something that can be seen in X-rays, blood tests, scans. It cannot be fabricated. Comparing the 2 conditions is just ridiculous.

How do you know his symptoms are real? Have you met him? Spoken his doctor? Having looked at the list of symptoms I could easily declare that I have it because the majority of symptoms cannot be tested for with blood tests or other investigations. It’s based on one’s claim to have all those symptoms. That’s why there’s still massive research taking place.

Do you say that about people with cancer too?

On the contrary, often it is driven people who keep pushing their bodies to be better when they really need to rest for longer

Wtf?
MND is neurological too

There's some astonishing ignorance on this thread

It’s when the brain has gone past fight or flight into freeze. Remeber long covid dysregulates the nervous system.

It shuts down to protect you and keep you safe. It does this by creating horrific symptoms to keep you in bed. These are created by the brain as a neurological response not a psychological response.

My daughter started experiencing what seemed liked seasonal/exercise- induced asthma after a Covid infection - she would get very wheezy whenever she went out in the winter, particularly when she went for long walks. She used a steroid inhaler for a few months and fortunately that seems to have cleared it up. She stopped using the inhaler and the wheezing hasn’t come back the last couple of winters. But then, she wanted to get better - I’m not convinced that some of the LC types do.

What is a brain in freeze ?

Some people just love being ill. They create their whole persona around it. I suppose they think it makes them more interesting in some way. I feel for you OP. I think you just have to let your DB get on with it, and definitely, definitely do not ask after every appointment and absolutely don’t feel guilty if you forget to ask. I know that’ll be hard at first and I’m sorry about your parents.

I've had a concussion and post concussion syndrome which is now being said to be similar to Long Covid. It's horrid and debilitating.

I understand both points of view, and for those who are family, it is very hard to be sympathetic to the ones struggling for a long time.

I think it's something that I'd say is best to be sympathetic to at times, but try to tell him you need to talk about other things too. It's hard having a chronic illness and I also have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic after my head injury. I know I've been guilty of talking about it too much. But I think it's not until you lose your health that you have a truly total empathetic response.

I agree it is a loss and your brother's approach is frustrating.

Why can’t ALS be treated successfully? Alzheimer’s? Huntingtons? Parkinson’s? MS?

Yes I know two people who have ME. Both desperately trying to get help, both now suffering with severe depression, one has an eating disorder. Both have been told that the depression is now their main illness, and by working on that they could recover. They are both under 25 and their lives will blighted by this forever as they've lost out on education and learning how to be social.

I think you have separate the illness ( which sounds genuine) from your frustration with his response to it. I would imagine that it's very easy to become obsessed with it as the sufferer has nothing else to focus on.

Why are you even on this thread with your nasty little mind?

LC affects predominantly women. Thats why builders and joiners are less affected.

He is.

I gave him life, and he saved the quality of mine.

He was so determined not to lose the mum he’d had that he was going to get me to “almost back to normal” even if he had to drag me there. And he’s so funny. I’d be veering off in a diagonal direction with legs of cotton wool, which is depressing when you are desperately trying walk in a straight line, but he had me breathless with laughter to the point where I didn’t notice the breathlessness from being knackered.

It was like being rehabbed for 18 months by David Goggins and Chris Rock’s love child. 🤣

Are you implying that your brother is malingering?

I don’t know. But it is defined as a neurological disease. Not a psychological.

How do you bring a brain out of freeze with drugs? Can you? Then the brain changes to keep that response permanent. How do you treat that with drugs?

@CassandraWebbthat was my cousin exactly. Full of energy, the first to volunteer to take on anything new. She was a nurse, but she’s had to take a desk job because nursing is too physically demanding.

dear god where to start.

having had ME/chronic fatigue for 20 years (long covid is basically the same) i can assure you that everything you've said has been said to me.

People dont believe that others could be fine one minute and can barely leave the house the next. Surely the medical profession would fix such a dreadful ailment? And surely tests would show reasons for it and issues would be present and obvious in bloods or scans? if there is no evidence the person must be deranged or lying….

WRONG

This is a debilitating illness. It’s not in the head. They can prove it exists because the mitochondria in the cells is different in sufferers. But they don’t test that. They should. But that’s the NHS budget for you. Diagnosis is based on symptoms, revolving around if there is no obvious reason then it’s ME. (presumably longcovid is the same with a history of covid in the past).

Why would your brother lie to you? It’s not like he’s lying to you as youre a benefits advisor and he’s trying to get free money or something! He's telling the truth.

He's exhausted. Frustrated beyond belief that nobody is helping him. That loved ones think hes lying. That nobody will listen to him. Then he comes across an online community of other exhausted frustrated worn down people who believe him and understand him. Hes not had that before. Suddenly he has hope. They have compassion and understanding Hes found his tribe.

These people aren't fuelling his symptoms. Those are sadly all too real. They are just agreeing with him as they have them too. They believe him.

Being with this group brings him people who care and don’t think he is a lazy bastard liar whose making this up to get out of his responsibilities. Thats you OP.

I can assure you that you do not want to trade places. It’s awful. You should apologise for your attitude. It sucks. Your betrayal is hurting him. Imagine it’s you. How would you feel? Your family call you a liar and think you should stay away from those who get understand you as somehow that will make you buck up and stop having symptoms. No it bloody won’t. You can’t get away from the symptoms. All you can do is rest and manage them as best you can.

At first i could only load three dishes in the dishwasher and i had to sit down. It was awful. My partner said since i was off sick i should do all the housework as he was out all day working and I should stop being lazy. How the hell could i do that! i could barely move.

Ultimate betrayal. I didn't want to be at home. i wanted to work. i was gasping for breath and my legs were like jelly. Loved ones clearly thought i was At It. Your brother will be the same.

Please believe him. He has no reason to lie. He is unwell. The nhs doesn't test for everything. if they did they would find evidence but they don’t. just like they don’t supply every medication for every illness. there just isn’t the budget.

if you want to help him pay for a course of acupuncture for him. it can do things western medicine cannot. it can really help wirh breathing. The fatigue however will take a long time. He will never be the same again. Especially as youve disbelieved and abandoned him and haven’t done any research to back up your opinions.

Poor guy. You ought to be ashamed of your lack of compassion but i will chalk it up to ignorance. Go read up on ME Chromic Fatigue. it’s the same thing with a different name. It’s real. It’s awful. Many are housebound or bedbound for decades. The forgotten ones. While their families go on as normal with their own lives……