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Well, i received my tribunal papers a few weeks ago, and today i have sent in my remaining evidence to the Tribunals Service. I have sent a letter from my GP and also a letter from the CFS/ME specialist, who i saw a couple of weeks ago.

The tribunal itself won’t be until the new year as they have a bit of a back log at the moment, so in one way it is nice not to have to think about it and to have plenty of time to get the evidence in etc. but at the same time i would just like it to be done with, whatever the outcome. This process began last Easter-time and it is now nearly Chistmas! I should be happy to think of all the back payment i will get, but as i doubt that i fit the narrow criteria, particularly for higher rate mobility, i don’t think i will be awarded that, however difficult my mobility problems are.

So anyway, the letters i have sent are the only really supportive evidence that i have, so let’s hope that they are detailed enough… both are quite brief so i will summarise the points made below:

Specialist Letter:

I am writing in support of this patient’s appeal…

Her diagnosis is clearly CFS (ME) and there has been a steady deterioration in her symptoms since i last saw her with increasing headaches, neck pain, fatigue and marked reduction in her physical exercise capacity.

She has considerable problems on standing… and has been diagnosed with Positional Orthostatic Tachycardia Syndrome… gives very marked postural symptoms. This is part of autonomic dysfunction, which underlies CFS.

She is not able to undertake activities of daily living without significant help from her partner. Her physical activity is limited to 5-10 minutes maximum. She has become more significantly depressed because of her disability.

…her disability is severe and progressive and has not shown any significant improvement with previous therapeutic input along the lines suggested by the NICE guidelines…

After the letter he wrote for the insurance company i was a bit disappointed with this one as it was less detailed and specific about what i can and can’t do, and this one for DLA seems more important to me, but it is quite strongly worded so it may be ok.

The letter from my GP is not great, but it is better than the very briefly and incorrectly filled form she initially did. I had to go back and tell her is was not good enough – a bit nerve-wracking!

So now her new letter says i cannot cook a meal for myself, cannot walk more than 150m* without discomfort/rest, that my condition is severe and that i have a certain amount of energy to work with each day so any help that i get makes a big difference in my ability to manage my energy and condition.

*this was the distance used in my rejection letter as the reason i did not qualify for higher rate mobility, but it seems the actual distance they use to judge can be 30m, 50m or who knows what next week, so her saying this may work against me, as i cannot always leave the house to walk anywhere at all…

We will see how these letters affect my appeal, i hope they are detailed/strong enough and help to avoid me having to talk for ages at the appeal about the nitty gritty of what i can and can’t do as it is very difficult to be consistent when there are no definite answers with such a condition as this, and also to concentrate and talk for any length of time, especially under stress.

I will not be having any representation either… but hopefully a benefits adviser will be coming to help me prepare for it once i get the date through, which may help me feel better about it and know what to expect.

Anyway i am trying not to think about it right now and leave it til the new year when it will actually happen… i don’t think there is anything more i can do, just need to see how it goes on the day…


Yesterday i had a good appointment with my specialist and he is writing me a report which will hopefully be thorough and supportive of my DLA claim and make it worth going to the appeal tribunal… he asked to see the DWP medical report in order to criticise it and correct any incorrect assumptions, so that is looking promising.

Then, this morning the tribunal papers came through in the post, so i have another little form to send back in the next few days, if i want to continue.

I am getting quite concerned now that it is getting closer and more real, that i have not got representation. I have been reading other people’s experiences, talking to people who know about these things, and the consensus seems to be that without representation it is a nightmare and they can rip your argument/statements to shreds in seconds… i was told by Welfare Right Service when they said they could not take my case on, that the tribunal panel will go easier on me because i am representing myself, but i am not convinced. Either i meet the criteria or i don’t, but the thought of having to be coherent and consistent for 45 mins to one hour about details of my condition, what i am capable of, what i can’t do etc, particularly with a fluctuating condition as mine, fills me with horror. Particularly after the experience of the DWP medical i had, where i just felt so ill from the effort and stress of going that i could hardly walk/speak or think clearly and it was so traumatic that i spent the next 8 days largly in bed recovering… the tribunal is certainly a more stressful thing and i think i need help.

I have emailed the benefits adviser who helped me with the form to ask if there is any chance Welfare Rights will change their minds, now that i have more evidence from the specialist, and where else to find a representative if not. Of course i will have to find these for myself, but no harm in asking. I think i can ask the Citizen’s Advice Bureau, and i think you can even take a solicitor, although i would have to pay for that i imagine…

So, still lots to sort out for DLA, and no sign of it being over any time soon! It would be nice to have it done before Christmas, as it has been hanging over me for so long.

ME/CFS Awareness

ME/CFS Awareness


September 2018
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