New M.E diagnosis - What next?

[QuitChewingMyPlectrum]

Doctor confirmed diagnosis of ME this week. However, I was sort of expecting to be referred for some kind of guidance or sent a few links for me to learn a little bit more. Obviously, I'm no stranger to Google but if anybody has any resources that might be useful for me, I would really appreciate them.

Do you mean they sent you home with no plan from the hospital clinic?

GP diagnosed in telephone apt after what's been months of limbo. No clue what next?

I dont think there is much next. it is a diagnosis that means we can't find anything wrong and don't know how to help. Your best bet is finding support from fellow sufferers, maybe online, or through face book, or similar, and ask for guidance there

In my NHS trust, ME / CFS isn't referred any more for ongoing treatment. Similarly Fibromyalgia, which used to be managed by Rheumatology. It sucks, as its just "here's your diagnosis, off you pop"

I have a medical condition with similar symptoms (EDS) and I've found some great support via the UK charity, their Facebook group (which runs live support sessions weekly as well as local support groups) Also, the Chronic Pain board on here is a great source of information and support. Even if it's just to find fellow sufferers and not feel so alone. There are quite a few people who post there who have CFS. I've not been on in a while, but it may be worth starting a new thread there.

Best of luck to you.

There isn’t really any next. The book fighting fatigue I thought was quite useful but I’ve never actually found the energy to read much of it

Yes the ongoing help is frequently non-existent. You'd think given all the links with long covid that there would be more help now, but that doesn't seem to be the case yet.

Different things help different people, is my observation. For me, the Gupta Program was really useful, alongside giving myself permission to rest, saying no to doing almost everything, reducing as many stress loads as possible, massively upping my (low) iron levels, making some dietary changes, and re-evaluating what a 'successful' life looked like. It's been a multi year journey and I am not back to where I was, but I'm much better. I hope it is faster for you. But really one of the most important things, I truly believe, is to lessen your load and let yourself rest as much as you possibly can, when your body says you need to. It's really hard. But really important. Much love and luck to you, it's an awful disease to have to try to work with x

What did they rule out before giving a diagnosis?

Thank you - I'll have a look.

Thank you, really helpful advice. Unfortunately, work, uni and 3 children don't allow for much rest. Something will likely have to give

Everything I think. Had so many bloods done!

There is help out there. Ask for a referral here https://www.uclh.nhs.uk/our-services/our-hospitals/royal-london-hospital-integrated-medicine/referrals-rlhim Even if you're not local you might be able to get virtual/video occupational therapy for management strategies and advice on improving your quality of life.

Ime (8 years) there is nothing next. You’re on your own 😕
I was hoping that with the focus now on long covid that something would happen for all of us, sadly not.

I have a couple of close friends and relative with long covid but they do not have ME or anything remotely resembling ME. One has failure in her bone marrow which means regular blood transfusions, and the other has heart failure. Neither have symptoms like ME. I don't think most long covid sufferers have anything like ME

Have you had POTS ruled out? I always bang on about this but it's so often misdiagnosed as ME/CFS.

This but also lime disease, MS, anca related illnesses, lupus, sjogrens Addisons and a whole host of other autoimmune conditions inc vasculitis.

I'd be asking what they have ruled out as ME imo is a diagnosis that should only be given once comprehensive bloods scans sleep studies etc have been completed.

www.meresearch.org.uk/research/other-resources/misdiagnosis-on-a-grand-scale/

The Reddit group r/cfs is very good and has loads of information on it

Most important thing to do first is learning how to pace and learning to listen to your body and recognise the signs of when you're overdoing it

I got a diagnosis of me years ago, before they realised I had pernicious anemia and hypothyroidism, I do think sometimes it's given as a diagnosis when doctors are stumped, I suffered for years before I found out what was wrong with me. I'm currently having some other medical issues and they've pretty much just done a full blood count, said its normal and that's the end of it. It's frustrating!

I'm not sure how often this happens but I was diagnosed with ME a decade ago. I tried everything to cure myself, threw good money after bad. Got worse year on year, couldn't understand it as have given up pretty much everything. Stopped having a social life, stopped working, stopped hobbies, stopped everything. I followed all the rules, rested, ate a clean diet, had all different types of therapy because people kept telling me I was depressed (I wasn't) my relationship fell apart because he resented me for being ill despite "looking fine". People thought I was making it all up for attention, it was hell.

I did research when I was able, tried to figure out what caused it so I knew how to fix it.

I kept going back to the GP, pushing for more tests because I couldn't understand how something so invisible could ruin my life to such an extent, I mean there's not even a blood test for it. He said I had health anxiety.

Finally, after years and years of pleading for tests, they discovered I actually have MS, Ankylosing Spondylitis and a heart condition. No amount of positive thinking, counselling and pacing was going to fix it.

Sometimes ME is diagnosed when they've got tired of looking for anything else.

Thank you - I'll take a look!