M.E. or chronic fatigue syndrome info plz

scrimping_steff

I think keeping a diary is a very good idea then the specialist will be able to tell if any other patterns are there for other illnesses. Not sure which kind of specialist your going to see but I just saw one at the hospital and she did give some helpful suggestions but after a couple of years there wasnt much else she could tell me. If you have got in touch with the m.e association they send a free pack which tells you what to do to get referered by your gp to them. But you can also go there and pay, don't know how good it is but at least it is only for m.e so they will know what they are talking about.

Someone suggested to me this week that I may have fibromyalgia, I went to my local library and got a book on it and it gave a chart to show symtoms of both illnesses and the differences and mine is definitly m.e. the book is called Fibromyalgia for dummies.

But at least you must feel like you are getting somewhere now and that is a huge step forward. Hope you get sorted and get some quality of life back.

Mumstheword

In today's times, there's 2 articles regarding some tests that, in the early stages, are showing genes which are acting unusually in people with ME.

Main article
http://www.timesonline.co.uk/article/0,,8122-1702267,00.html

Further comment
http://www.timesonline.co.uk/article/0,,8122-1702270,00.html

Ted_Hutchinson

Mumstheword wrote:

In today's times, there's 2 articles regarding some tests that, in the early stages, are showing genes which are acting unusually in people with ME.

Main article
http://www.timesonline.co.uk/article/0,,8122-1702267,00.html

Further comment
http://www.timesonline.co.uk/article/0,,8122-1702270,00.html

[size=+1]Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects.Not the same research but similar in that it shows a physical difference between the CFS group and the others.
[/size]

loopy_lass

Well folks, just to revive this thread to tell you ive just been to see a neurologist at the hospital... was in there 15 mins. he whacked my know, ankle and elbow joints with a rubber hammer type thing, looked at my eyes and said from your medical history, what youve told me & what ive just looked at i have no hesitation in diagnosing ME... he said he estimated id had it approx 6 yrs!!! he went on to ask why i hadnt seen my gp about it sooner!!!!!

i said i had and he said all that was wrong with me was depression & a lack of enthusiam and motivation...... Nurologist looks at me n says "oh, i shall be writing to your GP i think"...

Ooooops

I have just been turned down for DLA, is there anything else available?

thanks for all support


loops x

M.E.2-2

An interesting article written in plain English about M.E.

Click here

purplegirluk1

Hiya,

I have just been told that I probably have ME, its been going on for a year now. I changed GP's as my old one seemed to be ignoring the fact that I wasn't getting any better. I had glandular fever and it wasn't diagnosed for three months! This is probably why I have ended up with ME. I swapped GP's within the same practice and I am so happy with my new doc, she is wonderful and has really helped me. If it wasn't for her I would still be killing myslef working full time and having no quality of life at all!

I don't know very much about ME yet but I think the key to a diagnosis is to find a GP who really listens to you. My old GP couldn't remember me from one visit to the next but now my new GP remembers eveything we talked about in previous visits and actually seems to care about my illness. If you are having diagnosis issues go see differnt GP's, soem don'y even know anything about ME at all!

Good luck to you all.

loopy_lass

hope you get sorted purple. it took me nearly 6 yrs of thinking i was nuts!!!

keep us informed... have a re read of this post there may be some info which is useful to ya....

loops x

hjb123

I have been ill since December with suspected Chronic Fatigue Syndrome. I have not had a firm diagnosis yet, I have been on the waiting list to see a specialist for the last 3 months and have still not heard anything.

A friend who has ME suggested not only keeping a food diary but to make a graph. With '0' being how you feel on an average day and then when you have a bad day you could be at -3 or -5 and on a good day you might be on +3 or +5. This is really helpful especially if you keep track of what you have done and you can see how that affects you and can remedy it in the future. I made my graph from +5 to -5.

Try it, it is helpful!

H

Karfy

loopy_lass wrote:

he whacked my know, ankle and elbow joints with a rubber hammer type thing, looked at my eyes and said from your medical history, what youve told me & what ive just looked at i have no hesitation in diagnosing ME... he said he estimated id had it approx 6 yrs!!! he went on to ask why i hadnt seen my gp about it sooner!!!!!

i said i had and he said all that was wrong with me was depression & a lack of enthusiam and motivation...... Nurologist looks at me n says "oh, i shall be writing to your GP i think"...

I have just been turned down for DLA, is there anything else available?

loops x

im so glad you got the diagnosis and the neurologist was good!! yay thats great he'll be writing to your gp and telling him that it isnt a lack of enthusiasm and motivation. :j so many docs are living in the past with how they view the illness and need to come up to speed with the reality of it!

i was turned down for DLA first time despite not being able to go out without my wheelchair and stuff and really needing it. i asked my doc to write a letter to them because the gp who came round to 'assess' me if thats what u could have called it basically wrote lies on the form saying i could do stuff i couldnt. maybe you could ask you neurologist to write a letter?

you can apply for incapacity benefit because you cannot work and you could apply for income support. if you want to apply for them you have to do it at the same time however because once you get incap benefit apparently you get too much to qualify for income support and so somewhere it says you should apply for them at the same time. feel free to pm me if you want to get in touch or ask any other questions

take care, hope your having a good day! love karfy xxxxxxxxxxxxx

M.E.2-2

The Sleepydust E-Magazine.
I have not seen this before but after visiting the site here and reading back issues I have subscribed today (free)
They send a monthly newsletter concerning ME-CFS & FM (Fibromyalgia)
I have just read rather disturbing news re POSSIBLE changes to [font=Verdana, Arial, Helvetica, sans-serif] the proposed new medical guidance on ME/CFS for DLA,
Attendance Allowance and Carers Allowance decision
makers.
Hope this is useful.[/font]