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

somebody_else

Could I jump in a moment folks? First I should say that I don't have ME although originally I was misdiagnosed with it, and had a doctor who was adamant that my symptoms were all in my mind. Well, that changed when I had a brain haemorrhage, but not a great deal.

The reason I wanted to post was with regard to the DLA forms - please folks, don't worry about not being able to complete grammatical sentences. It is possible to be awarded DLA even if your form isn't filled in to A' Level English standard. If you misspell words or miss them out or construct really clunky sentences, don't worry - in fact leave them in. It goes to show some difficulty with cognitive function.

I also have to take slight issue with the poster who suggests only fit people who fib and work the system get DLA. I had my 4th award at the begining of the month and I'm far from fit (although a lot of the time I don't look too unwell) and I didn't tell any fibs.

What I did (and I've done this for my first claim and 3 renewals) was keep a diary for about a month - also create a full list of symptoms, what triggers them and what effect they have on me. Then my diary is a fairly comprehensive record of each day, what symptoms were causing me problems, what effect those symptoms had on me, what my pain levels were (I use a scale of 0 - 10; when 0 is pain-free and 10 is extreme pain) and what my mood was. I also filled in the form as best as possible - I didn't worry about correcting every spelling error, syntax error, etc. I also didn't assume that any reading between the lines would take place. Spell everything out in words of 2 syllables or fewer so there is no room for mis-interpretation. Having filled out the form, I printed off my list of symptoms and a month's worth of diary and sent them in with the form.

My last piece of advice - be prepared to go to Tribunal! That's how I got my first award. I know many of you are fighting brain fog and physical exhaustion, and I'll admit I didn't apply for my DLA until I'd improved a bit from my worst because it was so hard, but my first decision was over-turned at Tribunal (as I believe a lot of them are) so it's worth doing. Also be prepared to be led to believe you'll have to go to Cardiff for the Tribunal. You don't. Hearings are heard all overy the country - if you can't make the location they offer you, insist on one nearer to home.

Finally - don't give up folks, and good luck.

mardatha

well, SE, i said that only fit people who fib have the energy, but I got DLA too, after appeal and tribunal. But I can remember saying (often LOL) that if it wasn't for my OH and my doctor nagging and pushing me, I would have dropped it all. I wanted to, very much.
I can't do the diary thing though, that gets me down and makes me feel pathetic. I need to stay positive and stay fighting or I'll go under.

somebody_else

mardatha wrote: »

I can't do the diary thing though, that gets me down and makes me feel pathetic. I need to stay positive and stay fighting or I'll go under.

I wouldn't recommend it as a long term idea - you're right, it's incredibly depressing to have to write down how little one can do and how ill/painful it makes one, but for a month or two while filling in the forms can be very helpful. Apart from anything else, one is less likely to minimise the problems if it's all written down in front of you as you're filling in the forms.

I'll let you into a little secret - the first thought that went through my mind when I got the last award letter telling me I'd got HRM and LC for an indefinite period was "I can stop keeping that bluddy diary!". ;-)

CJ

I have to agree with SE that you have to be prepared to fill in every detail of your daily life however trivial it may seem. The questions as usual don't fit the variability of the illness at all and you have to use all the boxes and the extra pages at the end to the full extent.
I have has ME for 25 years and always thought that I shouldn't claim for DLA but my husband of 20 years retired last year at the age of 49 and left me in Nov because he needs his freedom now and he needs time to think, I am finding myself applying for DLA and being put forward for a social work assessment in the space of 10 weeks. How the hell did that happen?

maytaurus

CJ wrote: »

I have to agree with SE that you have to be prepared to fill in every detail of your daily life however trivial it may seem. The questions as usual don't fit the variability of the illness at all and you have to use all the boxes and the extra pages at the end to the full extent.
I have has ME for 25 years and always thought that I shouldn't claim for DLA but my husband of 20 years retired last year at the age of 49 and left me in Nov because he needs his freedom now and he needs time to think, I am finding myself applying for DLA and being put forward for a social work assessment in the space of 10 weeks. How the hell did that happen?

chrimson

After having to go to appeal, I went to CAB and saw a Welfare Rights Advisor. Although he helped and I was awarded "Middle Care", I didn't get the Mobility award, which was my greatest area of difficulty.
When I was reapplying, I was told to try the Advisor at MIND. I made the appointment and she filled in all the answers for me. She was able to sort out the wheat from the chaff. She knew what to leave out and what to put in. The main thing was that it was done as if it was my worst day, rather than days when I can walk a little etc.
What I'm trying to say is that I didn't have to give every detail of my daily life. She put in what was important.
When I got my letter back, I had been awarded Higher Rate Mobility along with the Middle Rate Care.
I would never have managed without this ladies help. many times I wanted to just ignore it and hope it went away.
It is hard, but it is your right, so do keep trying.

CJ

Thanks for the hug Maytaurus, I could definitely do with lots of those just now.

maytaurus

CJ here you are....don't miss any

maytaurus

20 January 2009
PRESS RELEASE

A TEST FOR CHRONIC FATIGUE SYNDROME /
MYALGIC ENCEPHALOMYELITIS (CFS/ME)

Dr Myhill, one of the authors of the paper, says

Using cognitive behaviour therapy or graded
exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever.

This test invalidates the psychological model of CFS/ME and clearly establishes this illness as having a physical basis.
Sufferers of CFS/ME have known this for many years but now we have the biochemical basis to prove this.

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/A%20TEST%20FOR%20CFS%20ME.pdf

Original Article
Chronic fatigue syndrome and mitochondrial dysfunction
available online January 15, 2009

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Chronic%20fatigue%20syndrome%20and%20mitochondrial%20dysfunction.pdf

marigoldhen

I have just spent ages reading the above articles and it has blown my mind. My daughter has ME and what I read made such sense. No wonder the poor kid is so ill. I'm now in a quandry and don't know what to do with the information.