View Full Version : Anyone know anything about M.E./CFS?

21-10-2010, 08:21 PM
Robyn has just been diagnosed with M.E. and we are trying to come to terms with the changes we are going to have to make to our lives.
She has already been advised to drop one of her A Levels.

Has anyone had any experience with this that can give us any advice?

Have no idea about it other than the mountain of paperwork the doctors gave us.

It's heartbreaking to see my normally so active and happy 16 year old unable to get out of bed for school and permanently looking so pale and like she hasn't slept for weeks.

School and the doctor have been brilliant but we now have an 18 week wait for her to be assessed by a specialist.

Any help gratefully received.

Thanks guys.


21-10-2010, 08:48 PM
No experience, just wanted to send you and Robyn a huge :hug2:

21-10-2010, 08:49 PM
Oh Hun :hug2: my brother had it when he was a teen. He is fine now and is training to be a nurse. I have a friend at work who has it, I will ask her tomorrow for any resources. Just remember not everybody has it to the same extreme :hug2:

21-10-2010, 08:53 PM
No help or advice I'm afraid but I have an infinite amount of :hug2: for you all.

21-10-2010, 09:00 PM
What Brit said :( Don't push her too hard, she has to pace herself on the days she feels ok or she will end up flat on her back for days afterwards. If you go to Disney use a wheelchair. Will post more later.

21-10-2010, 09:01 PM
Just out of interest did she ever have Glandular Fever?

21-10-2010, 09:21 PM

21-10-2010, 10:01 PM
I can't offer any advice but big hugs :hug2: coming your way and a bucket load of :pixiedust: too.

22-10-2010, 06:50 AM
Oh teresa, that mustve been a shock for you all - havent any advice or eperience im sorry, but :hug2: for you all

22-10-2010, 07:22 AM
no advice, but big hugs for you all :hug2::hug2::hug2:

22-10-2010, 07:55 AM
hugzzzz to robyn, teresa :hug2::hug2::hug2:

22-10-2010, 10:35 AM
Sending every good wish to you Teresa, and your beautiful daughter. :hug2: :hug2: :pdust: :pdust: :pdust: :pdust: :pdust:

mainecoon lover
22-10-2010, 01:04 PM
So sorry to hear this :hug2:

Try Contact a family as they will have some really go info.

Contact a Family - for families with disabled children: information on rare syndromes and disorders (http://www.cafamily.org.uk/index.php?section=861)


22-10-2010, 02:07 PM
:hug2: for you and Robyn

22-10-2010, 07:34 PM
Pardon my ignorance but what is M.E/CFS? Hope that Robyn is ok Teresa.

23-10-2010, 01:07 PM
Chronic Fatigue Syndrome :(

23-10-2010, 04:45 PM
Oh honey, here's some hugs for all of you :hug2: :hug2: :hug2:

23-10-2010, 09:32 PM

23-10-2010, 11:16 PM
:hug2::hug2::hug2: hugs to all of you

24-10-2010, 12:47 AM
:hug2::hug2::hug2::pixiedust:Let us know what we can do!!:pixiedust::pixiedust:

24-10-2010, 02:30 PM
Pardon my ignorance but what is M.E/CFS? Hope that Robyn is ok Teresa.

ME Research UK — What is ME? (http://www.meresearch.org.uk/information/whatisme.html)

24-10-2010, 02:30 PM
Thanks guys.

Numb at the moment.

25-10-2010, 09:29 AM

25-10-2010, 02:44 PM
Thinking of you all :hug2:

31-10-2010, 07:51 PM
Teresa, thanks for the link. So sorry to hear this. Hope that all turns out OK for your beautiful daughter.

11-11-2010, 10:01 PM
a girl at work had this and got into such a deep depression it was terrible she went from being a vibrant cheerful lass to just being unable to get out of bed and it really got to her mentally i hope your daughter is ok she sounds like she has a loving and supportive family around her.:hug2: