Two years of ME and six months of treatment

Started 15 March 2026 · 17 replies · 127 hearts · read 1.4k times

HattieExeter, UK · 15 March 2026

4 months ago

Two years of ME and six months of treatment Writing it down partly to work out what I actually think.

I have avoided asking about this for six weeks out of pure embarrassment.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

Not looking for a plan. Just company and whatever anyone has found.

KeeleyBlackpool, UK

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

KikiFacilitatorGlasgow, UK

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

MaisieScarborough, UK

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

8me too 9

NkosiJohannesburg, ZA

the opening post — yes, and the bit that took me longest to accept was the next part.

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

PerlaManila, PH

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

OndineLausanne, CH

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

BibiRabat, MA

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

HalCambridge, UK

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

BridieWexford, IE

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

OttolineEdinburgh, UK

#10

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

7me too 2

TobinCork, IE

#11

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

SephNorwich, UK

#12

Building on what the reply above wrote rather than answering the original question.

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

TabbyMargate, UK

#13

Yes to the burping. It is real, it is unbeautiful, and it does settle.

7me too 8

MinaLisbon, PT

#14

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

MaritGroningen, NL

#15

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

KikiFacilitatorGlasgow, UK

#16

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

LilPreston, UK

#17

the reply above — yes, and the bit that took me longest to accept was the next part.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.