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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
A MODEL has revealed how her life was left “unrecognisable” after being blighted by a cruel energy-sapping disease that took eight years to diagnose.

When she was just 18, Lauren Nathan-Lane was a social butterfly who loved to go clubbing and party hard at music festivals.

But in 2010, she starting feeling desperately tired and became wiped out with exhaustion that was so bad it left her bedbound.

She was back and forth seeing her doctor but says she was dismissed and told they couldn't find anything wrong.

After battling to be believed, only last year the theatre student was finally given an answer for her devastating illness.

She has ME - a brutal incurable condition that affects around 250,000 Brits - coupled with the chronic pain condition, fibromyalgia.

ME, also known as chronic fatigue syndrome, affects some patients so severely that they spend their days in darkened rooms, unable even to watch TV or listen to music.

Even touch is intolerable and many are tube-fed.
Click to expand...

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.
 
Last edited:
MeSci said:
"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.
Click to expand...
But that may not be true for many of us. I think they should only list in the guidelines symptoms that are common to most people with ME. Not everyone has sore throats, and not everyone has swollen glands.
 
Trish said:
But that may not be true for many of us. I think they should only list in the guidelines symptoms that are common to most people with ME. Not everyone has sore throats, and not everyone has swollen glands.
Click to expand...
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.
 
Trish said:
But that may not be true for many of us. I think they should only list in the guidelines symptoms that are common to most people with ME. Not everyone has sore throats, and not everyone has swollen glands.
Click to expand...

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!
 
held my nose and clicked on the link. It’s not what I would write but there aren’t any major issues with it. John Siddle and ME Association strategy of using personal stories to get their message into local and national media seems to be reasonably effective. Hopefully they will be able to contribute a lot to the GWAS publicity efforts.
 
You must log in or register to reply here.
Back
Top Bottom