A short sad history of ME/CFS

ash4becks

NEH wrote: »

Well there is two in Glasgow but they won't refer you to them...they don't like referring people on...

Even when i went to one of the specialists in Glasgow i had to ask for a letter from my GP to try and get an old insurance policy to cough up the money....My GP didn't even ask who i was going to see or anything, gave me a couple of moans about having to write a letter and that was it...Then i found out from my specialist that my GP was also someone else's GP, so must have known about him....It really is closed doors with GP's...

I went to see a specialist in Sunderland about 5 years back to get some help with my ME as it was then but he was pretty senior then and i wouldn't be surprised if he had gone to the great cake shop in the sky...

KxMx i am like you resigned to my fate after 17 years but as this current relapse with the Fibro is wearing on i jsut wanted to hear the latest opinion on what new techinques if any were being carried out as time moves on. I'm trying new treatments now, i don't hold out much hope given the side effects are being troublesome but as there are very small positive signs that is what is keeping me going. I didn't need that test but now i have had it and it proves that there is someting physically wrong i can legitamately next time a GP tells me it's one of those illnesses i can say well look at the blood test result, you can't really argue against science and cold hard facts...

As some of you were asking about the blood test i did another google search this morning. It may just be my clinic does it, just thought i had better warn you.

my GP if i get to see her is really spot on when my ear infection was really bad she had me refered there and then on phone and i had appointment in 4 days, what was the guy in sunderland like helpful or not , did he write to you to confirm what was going on , or change your meds etc

mardatha

NEH, I agree, we need to keep up with the latest research and findings - because you might get a locum or a new doc who dismisses ME. I did quite recently. I disagreed with everything she said and she showed me the door .
I said I would come back when there was a real trained doctor back on duty. She was about 19 and a little miss know it all. Hasnt she got a lot to learn !

NEH

ash4becks wrote: »

my GP if i get to see her is really spot on when my ear infection was really bad she had me refered there and then on phone and i had appointment in 4 days, what was the guy in sunderland like helpful or not , did he write to you to confirm what was going on , or change your meds etc

I can't really remember....I think he knew his stuff judging by an old letter of his...As i said though he was pretty old when i saw him and i don't know whether he is still alive.

NEH

mardatha wrote: »

NEH, I agree, we need to keep up with the latest research and findings - because you might get a locum or a new doc who dismisses ME. I did quite recently. I disagreed with everything she said and she showed me the door .
I said I would come back when there was a real trained doctor back on duty. She was about 19 and a little miss know it all. Hasnt she got a lot to learn !

Well i was fine for a few years and then suddenly i got a dodgy GP who said it's one of those illnesses, as silly as it sounds it came as such a shock i didn't have my standard speech ready for him.....Then i moved and came across this GP who will sign sick forms etc based on my notes but he never asks questions, that would be a step far to far for him.

KxMx

Well i'm in Suffolk and so is my local service- but you have to travel to Norfolk to be assessed and then you continue with Norfolk (GP with special interest) or Lowestoft (Suffolk- occupational Therapist) depending on where they put you.

Since the assessment would be 2 trains, 1 and 1/2 hours travel plus would need an overnight stay, just not feasable.

Asked London if they would see me- they were concerned about the travel which is less than my "local" service!

mardatha

http://edition.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/?hpt=3DT2#fbid=KHCCJhLukqj&wom=false

Lemony

What is the blood test someone mentioned for ME/CFS? I have Fibromyalgia with an ME element (whatever that means) and I have been told there is no blood test to diagnose it. I have regular blood tests because I have underlying auto-immune abnormalities and they check for changes and to rule other things. But I have been told they cannot do a blood test specifically to diagnose Fibromyalgia/ME as no such test exists.

NEH

Lemony wrote: »

What is the blood test someone mentioned for ME/CFS? I have Fibromyalgia with an ME element (whatever that means) and I have been told there is no blood test to diagnose it. I have regular blood tests because I have underlying auto-immune abnormalities and they check for changes and to rule other things. But I have been told they cannot do a blood test specifically to diagnose Fibromyalgia/ME as no such test exists.

It doesn't diagnose Fibromyalgia/ME, i never said that. It's a blood test that has shown an abnormal result for me that fits in with my history and proves that what has been wrong with me is true....

CJN4

Hi,

Would be really helpful if you could remember the actual blood test.

Thanks

prettypeach_2

The blood test that seems to prove something is the mitochondrial function one.
There's something about mitochondrial cells and the heart. They are cells that are to do with energy production I think, and the hearts of M.E. patients, so the theory goes, function below par in some way.
There's loads about the mitochondria test(s) on the net.
Unfortunately they're expensive, I've got a diagnosis already but would still like to get these tests myself, wish I could afford them.