AIBU to be terrified about starting an ME/CFS diagnosis pathway?

[ToffeePennie]

I’ve been told I’m now on the diagnosis pathway for auto immune disorders, specifically ME and CFS. Possibly a few other things, but those two specifically. The doctors do not think it could be anything else, this is their last chance at a diagnosis.
I am terrified. My immune system is crap anyway, due to me being 1/10 born with my specific heart condition and the only female with the condition ever.
Im really worried this could be the beginning of the end but im only in my 30s and I have children and a DH and a life I love.
Any sensible advice welcomed!

According to the ME Association, somewhere around 5-10% of adults recover.
Glad to hear you did!

https://meassociation.org.uk/wp-content/uploads/2025/12/PROGNOSIS-PERMANENCY-AND-QUALITY-OF-LIFE-IN-ME_CFS-V3.pdf

B12 deficiency too. Especially if you're having issues absorbing nutrients. I find that 8 weekly or 12 weekly injections make the world of difference

Sorry, I think my reference to cancer diagnosis wasn't clear. What I meant was that the use of the word 'pathway' by medical professionals might be causing the OP undue alarm because the word is often associated with cancer diagnosis and treatment, and might be understood to mean that early and possibly quite invasive and stressful treatment was vital to prevent the conditioning worsening. ME/CFS is a different kettle of fish and I wasn't meaning in any way to compare actual conditions, just to try to reduce any anxiety about the use of the word 'pathway'.

Ah I see that makes sense @Redbushteaforme thanks for explaining

Could you try an iron infusion? People with low ferritin say it can work wonders. If your periods are really heavy that could be causing anaemia. The nhs threshold for iron is really low but lots of people need much more than low threshold to function properly

I would be a bit suspicious about the thyroid and iron results being low and that being disregarded. My ferritin got down to 11 and the gp didn’t think it was particularly worth treating even though I already have an ME diagnosis so extra fatigue isn’t something I need!
Can you see the actual results for yourself and research for yourself if they are too low. It’s not that uncommon for women to be left untreated for years with thyroid problems.
Also, is anyone looking into the malabsorption issue? That’s a symptom of something that needs investigating, not something to just accept.

Where does that article mention chronic illness? Do you live with a chronic, exhausting, illness? The counselling when you are diagnosed with CF starts off with acceptance. Without a level of acceptance, you can't manage your condition.

Have you had genetic testing?

Sorry to hear you are experiencing all these symptoms. It must be really tough. As other have said, ME/CFS can be quite individual. It ranges from mild/moderate/severe/v severe. A diagnosis is helpful as it means you can get advice on managing and give yourself the best chances of improving or avoiding getting worse. Whilst there isn’t a specific test to confirm diagnosis, there are strict diagnostic criteria. The main one is PEM or post exertional malaise. This basically means your symptoms get worse when you expend more energy than you have in your energy envelope, but this doesn’t kick in straight away - it’s usually delayed by a few hours or often a day or even two.
If your GP is thinking you may in fact have an auto immune disease (ME/CFS is not classified as auto immune although may well have an auto immune element as it is a multi system
dusease) they may want to do an ANA test which can help identify or rule out auto immune. It sounds like they are doing all the right tests to get to the bottom of it and if it is ME/CFS then the charities mentioned above are really helpful. You may need to make some/many lifestyle changes and it can be very limiting, but it’s very varied and a diagnosis will help you in the long run.

As a start, I’d recommend asking for a copy of your results - making sure that they give you the reference ranges as well. Often, you can be just a smidge over the lowest number and you won’t be treated - but you could be a long way away from the optimum range. Also worth bearing in mind that different health authorities have different ranges for their test results.

With the way you’ve been feeling, I would want to be fully armed with the knowledge that the following had been tested (and to know the results and ranges). Thyroid (T4 and TSH - sadly, the NHS refuse to acknowledge the significance of T3), Vitamin D3, Vitamin B12, ferritin/folate, full blood count. That’s a starting point, but you need the results and the ranges they use to even begin to figure out what direction you may need to push for my info.

I have Hashimtos and pernicious anaemia (under active thyroid and low B12). Both are autoimmune conditions. I also have CFS, not an autoimmune condition.

Please don’t worry that it’s the beginning of the end. Start with the tests/results to arm yourself with info and then take steps from there. Post on here, someone will help with the next steps.

Definitely look into/ask about pernicious anaemia. Low/malabsorbtion of B12 hits some of your symptoms

Especially the feeling cold part. I used to sleep under multiple quilts. It wasn't until I was presrcibed b12 injections that I realised I was the weird overly cold person

How are you feeling now OP? Hopefully you’ve got some ideas and useful advice from this thread

I am sorry to derail, but how did all of you get referred?

I've had issues for years, GPs have run countless bloods (all frustratingly within normal) and have told me I have ME. I've never been referred to a consultant, and the clinic referral the GP made resulted in a letter to me (with someone else's name on) saying the clinic no longer exists. I suspect Long Covid as I've been much worse since then.

I told the GP, and their reaction is pretty much, oh well, nothing else we can do then. Arghh.

Wishing the OP (& all of you) better experiences and some actual help.

I’m sorry I don’t have up to date info but didn’t want to read and run. Might it be worth trying a different GP at your surgery who might be more sympathetic and willing to run fresh tests? More recently I’ve ended up going private tbh x

So I’ve had a full pannel for thyroid and a full iron/anaemia work up. Both came back low but nothing “too” low.

Oh for goodness sake .. what exactly were your results and lab ranges?? Many GPS say a ferritin level of 15 is fine but you actually need to be 70 just for healthy hair growth, so it needs to actually be higher for it to be optimal. NHS levels are absolutely useless for women. Please post your ferritin, b12, vit d levels (and thyroid for other posters who might understand them).

This might help:

https://meassociation.org.uk/healthcare-4-me/nhs-specialist-services-me-cfs-lc/

it’s a postcode lottery. Hopefully there is something
suitable in your area.

Feeling cold is also a common symptom of ME/CFS.

Absolutely this! If you can post your results (along with the ranges) then there are likely a number of posters who can guide you better. The ranges are important, especially as different health authorities often use different ranges (which seems crazy to me, but that’s a whole different topic!).

I’ve had ME/CFS for 35 years, and in that time I’ve had a few remissions/relapses. I had a terrible relapse on Prostap! The exhaustion and the bone pain were unbearable. Did these symptoms start when you went on Prostap?

My friend mum had ME. She had a tough time but she recovered and lived until 83. She died from dementia.