Article: It took me eight years to convince docs something was wrong after ME left me 'unrecognisable' - Dec 2019

https://www.thesun.co.uk/fabulous/10615282/eight-years-convince-docs-me-unrecognisable/

eta: I wish they would get away from this thing that the 'pain' side of things is Fibro; ie ME causes pain too.

 

"a sore throat or sore glands that aren't swollen"?

I hope this will be changed in the new guidelines. My neck glands are permanently swollen now - have been for years.

 

But there are probably other listed symptoms that we don't all have, but which are common, for example headaches and feeling dizzy or sick.

 

Yes, they came up with clinical descriptions and criteria, also research criteria, before any really big, detailed studies were made. Do we even have those results yet? I think what we have so far is the accumulation of many small studies, plus »anecdotal » reports and what our few expert clinicians have said.

I never had swollen glands myself, though in the early years, I had the chronic sore throat and very frequent colds. Hydrocortisone, as well as years ill and probably « readjustments » of my immune system helped the sore throats and colds (but other problems filled right in.

Worse than « fatigue » or PEM were the cognitive and memory difficulties of my first 10 years, and now in the second decade, I have bad orthostatic hypotension and other dysautonomias.

 

Symptoms vary between us and for each of us over time but they are all pointers to having ME. There needs to be a list of symptoms that many people have but not all. This is true for lots of illnesses and is only a problem if ignorant doctors start excluding people because they do not have the classic list.

Experts who treat lots of patients would be great!