M.E. or chronic fatigue syndrome info plz

Ted_Hutchinson

CASE NOTES ME Lots of useful links and you can

Listen to the Latest Programme

loopy_lass

had my DLA rejected for 2nd time, off to see a local disability action group for some advice.... will keep ya posted..... thanks ted & M.E.2.... hope your all having a reasonable day!...

loops

MonkeyGirl

Sorry you got turned down try this site http://www.dialuk.info/ They maybe able to help.

MonkeyGirl

tomk_3

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

One can read a bit more about what this research is at the following two sites:

http://www.cfsrf.com/pdf/Newsletter-10.pdf

http://www.cfsrf.com/pdf/Appeal.pdf

A lot of people have got confused by it and seem to think it is to do with hereditary factors as it's called gene expression research but it seems to be something else. All very exciting for somebody like me who has been severely ill for over 11 years - if nothing else, it might be something that could be used to show we're sick (e.g. for disability assessments) even if it doesn't bring a cure anytime soon.

tomk_3

M.E.2 wrote:

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]

Here are links to subscribe to a couple of other free newsletters:
http://www.phoenix-cfs.org/Phoenix%20Rising%20subscribe.htm
- if one does this, one gets a newsletters sent as a pdf file.

The first two issues can be read
http://www.phoenix-cfs.org/Phoenix%20Rising%20Vol%20I%20No%20I.htm

http://www.phoenix-cfs.org/Phoenix%20Rising%20I%20II.htm

I'm grateful to Cort for doing this - he mainly concentrates on trying to explain the research is simpler terms which can be handy. Cort is just a patient.

Another free newsletter is the Invest in M.E. newsletter:
http://www.investinme.org/IIMENewslettersubs.htm

They're into raising money for research by lobbying and fundraising. The team behind it is one patient and three parents as I recall. It's great all the people who do voluntary work for people with ME/CFS

fabaroo

Does anyone suffer from CfS or a similar illness, and is so how do you stay so positive. I was diagnosed last summer after having glandular fever. I Have tried pacing myself, eating healthily, i've had alternative therapies and homeopathy, but i'm still getting reaccuring viral symptoms, which disrupt my life. and i have to have time off work.
Would like to know if anyone similar problems.

Thanks jen x

hjb123

Hi,

I have been ill since December 2004 with CFS, I have been diagnosed by the doctor and am still waiting to see a specialist although things are moving quicker now. It started when I had a viral infection in the November and I guess I never really recovered from that, I had gone back to work for a month then was off ever since (with the exception of about 3 half day when I tried unsuccessfully to go back - was too much). It is very hard as it is a varying illness but there is plenty of support about. I also suffer from bad migraines which seem to have worsened with the CFS and I havent worked since december 04, my contract was terminated in May 05 as a result of my ill health. It is hard to keep going, it disrupts life but the way I look at it is I will get better and the sooner the better!

PM me if you like, its great to talk to people who know what its like!

H

cha97michelle

Just a quick question - i think my doctor is on the road to saying i have CFS or ME. I have been ill since the end of October,off work now for three months. The drs have done a number of tests for things like glandular fever, CMV which have come back negative.

How long were you ill for before diagnosis?? Also, what sort of things has your GP done to try to help you - cos mine is sat with a medical dictionary every time i visit him. I've not been ill in years and currently am very down - i just want a diagnosis.

so far work have been very understanding. (I'm a teacher.) I think i could be off a long time without getting sacked due to the nature of my contract.

fabaroo

Hello Cha97Michelle

Sorry to hear your feeling so down.!!! Big hug!!

Mine started 2003, with ibs symptoms and was okay until april 2004 had 6 months off uni with an unknown virus, got well again on my own then carried on getting niggling chest infections etc. Between Jan and April 2005 i went to the drs numerous times with tonsilitis and swollen glands. In April i had to leave uni, i asked for blood tests for glandular fever. All blood tests came back negative. Had 7 months off work from April - Nov. I was diagnosed in the summer as having cfs, my fourth blood test at the hospital showed i had had glandular fever. At the hospital i had lots of tests to rule out anything else, and some advice on pacing myself. To be honest though i felt i knew more about Cfs than the specialist because i had looked it up on loads of web sites.

I can only advise you to keep going back to the drs, i had to see 6 different drs at my surgery before i was taken seriously.

Pm if you want to chat anytime would like to know how you get on.

Keep smiling we will all get better one day xx

cha97michelle

Thanks for your kind thoughts.

sounds like i might have a bit of a wait before i get some sort of diagnosis. I'd read on the internet that it takes about 6 months. I think i would feel better just knowing.

I'm just waiting for a blood test back from the hospital to see if i had glandular fever. The test they did in November at the drs came back negative. I had glandular fever at 13. Then a sort of relapse at 17. I suppose it could all be related. I've had about 5 stressful years, so i'm guessing this is my body telling me it is unhappy.

I hope you feel a bit better yourself soon.
Michelle