To wonder what's the point in going down the Long COVID/ME diagnosis pathway

[QuitChewingMyPlectrum]

From what I have worked out so far, happy to be corrected on this, there is no treatment. Apparently if it’s Long Covid, they may refer you to a group of people that you talk about how crap it is. If it's ME they don't really do anything either.

My doctor discussed the possibility a couple of months ago that if I didn't feel any better by now, I may well go down that pathway.

I'm so tired I don't really think there's any point to it is there?

If anybody has any insight into this please let me know.

Currently sleeping around about 12 to 14 hours a day and not able to work very well. Brain fog and exhaustion, getting everything that is going around, switching between ear infections and throat infections.
It's bloody miserable, but I'm just wondering what the point is of going for a diagnosis?

AIBU to not bother?

It can't be cured but there is treatment that can help manage symptoms. I have had Fibromyalgia for about 9 years, and now long Covid too. I'm on several medications to help manage the worst of the symptoms, and in the past accessed other types of therapy to manage the fibro, including physio and acupuncture. Through long Covid clinic I have had vocal physio (kept losing my voice) and have been offered CBT. I also accessed a local ME/fibro group which was useful for management tips and advice with diet.

Apart from these treatments, having a diagnosis can be helpful in understanding your body and how you might react to things. If struggling with work a diagnosis can help you receive support - I was referred to occupational health who advised several adjustment's my workplace could make to help. If unable to work, a diagnosis might help with any benefits you may be entitled too.

The diagnosis process is one of elimination, so at least you know nothing else is going on to cause these symptoms.

I think the only disadvantage of the ME/long Covid label is then having other symptoms dismissed as just being linked to it - but tbh I think that happens to women who have chronic ill health without a particular diagnosis anyway.

@gotohellforheavenssake Thank you, that is incredibly helpful. I’m very concerned about my dwindling ability to concentrate on work so if there are any therapies or changes I can make this would be very useful.

Do you have critical illness cover or income protection?

Sorry the above question was directed at @AuDHD4Me

The diagnosis may just rules out everything else which is important to check no alternative causes of your extreme fatigue.

Some places also refer you (upon request) to CFS support services which teach you pacing skills and help you understand some techniques to cope at work etc

I think a diagnosis may be useful for all sorts of things over time. For one thing, it’s validation of how poorly you are. This is necessary if at some point you need to stop work and claim benefits. For another, you’re already in line if new treatments or management strategies emerge. It’s also a label which can help you explain your situation and needs to the people in your life.

You might find some of the current management advice helpful. For instance with ME which I have, there is pacing. This is impossible to do perfectly, but even adopting the ideas where you can, may be helpful. It’s by no means a cure, but helps to stop the symptoms escalating.

It’s not been my experience that when I have new symptoms, they are dismissed as ‘just your ME’ - they have always been investigated.

So sorry you’re feeling so rotten.

I claimed Disability Living Allowance when I had ME/CFS. A diagnosis probably helped with that. I don’t know if it would nowadays with a PIP claim so much though. Also having a recognised disabling chronic health condition might be helpful when liaising with employers and occupational health.

I found it very helpful especially for reasonable adjustments at work as I had an occupational health and occupational therapist report to give them.

I found the pacing resources helpful and also had access to specialist rehabilitation exercise classes to help build my strength to go back to work as I am on my feet a lot.

I know it can differ area to area, but here the team will also contact your GP to advise on possible medication or request that they refer for scans etc.. They have been great when both me and DH relapsed too at providing support.

The cognitive fatigue aspects are often the hardest to manage I found, screens particularly added to my cognitive fatigue. I found reducing the red level in my screen colours helped with my migraines. I also had migralens glasses for when it it was bad.

Was going to post this. Learning to pace especially has been really important for me. And the blood tests I’ve had due to the long COVID service has shown up an important health condition I was unaware of. It’s been really helpful.

Spotted this today on subject incase of interest www.sciencealert.com/landmark-study-confirms-chronic-fatigue-syndrome-is-unambiguously-biological

I don't, sadly

Ok no worries I was just thinking a diagnosis would give you access to claim on one or both of those.

I've noticed your user name- have you fully explored if how you're feeling is related to autism/adhd?

This is all very useful. To those who've posted, thank you!
I'm Self employed which is why the work thing is a bit stressful - I couldn't remember the word for boat the other day, and my ND kids are sometimes a full time job. I'm terrified of dropping the ball!

@InterestedinEfteling
interestingly, a few years ago I went through a period of burnout. In some ways, this is quite similar but in others completely different.
This feels10 times worse, more physical than mental although the mental thing is stressful. It's also come directly after a horrible bout of Covid.

How long ago did you have covid? Sometimes it takes months to go but it does (for most) eventually go. I'd maybe investigate the burn out side of things first in regards to ADHD/autism.

I am also SE with ND kids and have ME (had it since 2015).

I’ve done the CFS clinic and it’s quite useful, there’s stuff I learnt about my condition I wouldn’t have known otherwise. And really gets you to look at pacing.

Yes it's worth it if only to learn pacing properly and to double check things. For me my GP spent 2 years going I don't know......1 30 min appointment and I had LC diagnosis and POTS diagnosis (POTS is very common with LC sufferers).

I've also been started on medication to try and help my muscle aches and headaches.

There isn't a cure or magic pill but the symptoms management becomes a big thing. You also have to do quite a bit on your own and it's complete trial and error and it has to be done slowly over a number of weeks with a symptoms diary to see if that aspect is helping.

Are you taking any supplements? Vit B complexes and magnesium can help fatigue. Also a research paper last July found a correlation in about 50% with taking q10 alongside alpha lipoic acid.

This isn't actually true they originally thought it took about 6 months but actually what they have found is those with milder cases just stop bothering going to Dr's about it. It came up in the covid enquiry.

I read a story about a man who went to Germany (I think it was Germany) he paid privately for treatment for long COVID, think it cost him around 4k but essentially they cleaned his blood and he was cured. If I had long COVID and had the means, then I would consider this.

Having a diagnosis of ME/CFS has made it easier for me to explain why I’m struggling to work to my employer, and has meant we could put adjustments in place. “I’m just really tired and feel fluey all the time but not diagnosed with anything” doesn’t get that.

I think I'd rather be diagnosed and have it confirmed one way or the other.

@MissMarple0203 this is related to microclots and filtering blood then putting it back. Its about 13-15k and is unproven- works for a some but percentage isn't great. BMJ has concerns over its use.

Thank you, thats useful to know!

This is valid for sure. I appreciate your post.

Another helpful post, thank you. I do take B and magnesium, I'll have a look at the others but I think perhaps you're right.