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 guide on this and it covered the ordinary version. Mine is not quite the ordinary version and that is why I am asking.

I have had a fortnight of this and then three good days and then another fortnight, and the pattern is the bit I would most like to understand.

Squeamish subject, so I am going to be plain about it and get it over with. It has been going on for long enough now that I would like to know whether it is ordinary.

The figure in the title is not rhetorical: two years is what my own notes actually say, counted back through them this evening rather than estimated.

Thank you for reading something this unglamorous. Any experience welcome, and timescales especially.

KeeleyBlackpool, UK

I had to accept a smaller week. Not permanently, as it turns out, but for about a year, and the accepting was harder than the smaller week.

KikiFacilitatorGlasgow, UK

I want to name that an account of something resolving and an account of something that did not are equally welcome here. A page carrying only the first kind would be no use to the person reading it at two in the morning.

MaisieScarborough, UK

My clinic asked me to change one thing at a time with four weeks between changes, which felt glacial and was completely correct.

8me too 9

NkosiJohannesburg, ZA

Picking up Keeley’s point rather than starting a new one.

Somebody in this circle described a good day as a loan rather than a gift, and I have quoted that to about nine people since.

PerlaManila, PH

I keep a very simple three-colour note of each day and the pattern across a month is visible in a way that no single day ever is.

OndineLausanne, CH

The thing I underestimated was cognitive fatigue as distinct from physical. A demanding hour of thinking cost me the same as a walk.

BibiRabat, MA

This is why I read the boring weeks. Thank you for the boring weeks.

HalCambridge, UK

What I would say to somebody starting is that going slower than the schedule is not a compromise here. It is the sensible plan.

BridieWexford, IE

I had to renegotiate work, which was frightening and turned out to be the single most protective thing I did.

OttolineEdinburgh, UK

#10

Rest that is actually rest turned out to be a skill I did not have. Lying down with my phone was not rest and it took me a year to notice.

7me too 2

TobinCork, IE

#11

My appetite changes and my energy changes interacted in ways that took months to untangle, and eating consistently was what stabilised both.

SephNorwich, UK

#12

Building on what Ottoline wrote rather than answering the original question.

Mine improved to a genuinely better place over eighteen months and I would not have believed that in month two.

TabbyMargate, UK

#13

The advice to exercise gently is complicated for us and I would say be very careful with it. Mine went badly and my clinic explained why afterwards.

7me too 8

MinaLisbon, PT

#14

What helped enormously was writing down what I did each day, not how I felt. Feelings lagged; activity was the leading indicator.

MaritGroningen, NL

#15

The overlap in symptoms means I check anything new with my clinic rather than assuming it belongs to one story or the other.

KikiFacilitatorGlasgow, UK

#16

Holding a boundary: we do not swap remedies in this circle as though they were prescriptions. Describing what happened to you is welcome; telling somebody what to take is not.

LilPreston, UK

#17

Picking up Mina’s point rather than starting a new one.

Nothing here is medical advice and with this combination I would say that more firmly than usual. The pacing has to be built with somebody who knows you.