ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

Millburn_farm

here's the link

http://www.meassociation.org.uk/content/view/807/161/

I hope

ivyleaf

Thanks for that!:D

jaxw17

I have signed. please please will as many people sign as possible.

I am weary just thinking abiout it it is bad enough being stricken with this awful condition witout having to fight every step of the way.

hjb123

Ive just been to sign too

CJ

I am weary just thinking abiout it it is bad enough being stricken with this awful condition witout having to fight every step of the way.[/quote]

We fought our local health board for 9 years to get some provision for ME, at one conference we held one HB member said would we really like funding to be taken away from cancer patients. We came 16th on the list of importance after tattoo removal!. Eventually we were given an ME Nurse Specialist and afetr 4 or 5 years he is it for about 600 patients and he spends much of his time travelling to talk to other health boards in Scotland. As far as I am aware ,but no doubt someone will put me right, he is still the only one in Scotland. Because he spends so much time doing that there is about a 6 month waiting list for new referrals.
I have found that my gp thinks I am now his responsibility and really can't be ar.... to deal with me.
Our support group spends all its time shaking buckets and fundraising for www.meresearch.org.uk so they can pay for research to find out what is wrong with us
I know there are other illnesses that aren't funded for research but it is sadly not the case that we are a rare illness

lisafenn

Hi guys

I am 41 years old and three years ago i had an infection in my brain called Encephalitis which has left me very disabled and with an aquired brain injury.

Since i got sick i have really been through the mill.

The brain injury causes severe fatigue and i have had such awful pain in my legs that i have been unable to leave the house.

It was believed that i might have developed the beginings of rheumatoid arthiritis so i was sent to see a consultant. She said i didnt have this condition. but the pain in my legs (upper legs) was becoming worse and worse. I have recently had my first appointment at my local pain clinic after a referal from my neurologist. The Dr at the pain clinic has put me on a drug called Epilim, which is usually used to treat epileptic seizures, even though i dont have seizures. This is proving to have an effect and for the last couple of weeks i have been able to go for short walks without almost having to crawl in agony after just 2 mins walking.

My point of my posting this is that the rheumatoid consultant suggested i may well have ME/CFS. The only prob with this diagnosis is that the symptoms are pretty much the same as the severe fatigue caused by a brain injury.
Therefore i would make the educated guess that ME/CFS is indeed a neurological condition.

I live in Devon and recieve help from Headway Devon.. a charity that helps people with aquired brain injury and one of the top bosses there recently informed me that ME/CFS is now considered as a brain injury in its own right... so i asked, considering i have ME AND a brain injury ( Double whammy)... WHAT DO I WIN lol

Take care everyone

luv lisa

sleepymy

I find your post very interesting lisa. My husband had a severe brain injury several years ago and I've had ME for over a decade. As time has went on I've noticed that I share many of his symptoms i.e. memory, concentration, word finding etc. Not only that we have problems in these areas, but quite similar problems.

He developed night time epilepsy 9yrs after his accident and now suffers from tiredness, although not to the level I would thankfully. Sore outer thighs is one of my troublesome symptoms when I've overdone it/am crashing.

I'm so sorry about your infection, it's horrible to have the rug pulled from under you like that. In an effort to offer you a smidgen of hope, my husband excelled far beyond what the doctors predicted. He was in a level 4-5 coma for a few days and then spend 3mths in hospital, his parents were told to research care facilities for him. He will always have some difficulties but has more of a life than ever expected. xxx

lisafenn

Hi Sleppmy

I'm so sorry to hear of your plight.

When i got my injury i never went into coma... the hospital dont understand why i remained conncious... i was supposed to have died. All i remember is being in extreme agony for 2 weeks.

Its common for people with aquired brain injury ( ABI) to develop talents they didnt have before. For example i now make specialist greetings cards and gifts. I couldnt do that before.

I spent a year learning to walk and talk after i got sick and it was a struggle.

Up until i started taking the epilim 3 weeks ago i was pretty depressed due to the pain and exhaustion, and almost suicidal.

The Doc i saw at the pain clinic told me he thinks i am depressed. I told him " if you were trapped in my body with pain and fatigue for the past 3 yrs, which is steadily getting worse and preventing you from leaving the house, you would be pretty hacked off too" lol... some Doctors say the most ridiculous thing.

I am aware that some depression occurs with a brain injury but i dont feel half as bad now that i am taking the drugs. Another good thing about the epilim is that it helps me to sleep so i am no longer awake until 2 or 3am.

Hope you have a good day hun

luv lisa

xxx

Mojisola

lisafenn wrote: »

My point of my posting this is that the rheumatoid consultant suggested i may well have ME/CFS. The only prob with this diagnosis is that the symptoms are pretty much the same as the severe fatigue caused by a brain injury.
Therefore i would make the educated guess that ME/CFS is indeed a neurological condition.

There is no doubt that ME is a neurological condition - it's accepted as such by the World Health Organisation and the NHS.

Sorry to hear of your problems.

CJ

Have just received my Breakthrough magazine from www.meresearch.org.uk which is worth a read in itself on new research that is taking place. Dr Neil Abbot who gave an expert witness statement at the High Court is providing a summary of his conclusions on CBT & GET

Isn't the weather lovely, wish it would make everything better

caroline