× Members

Long term ME/CFS

More
6 years 3 months ago #202696 by Gordon
Replied by Gordon on topic Long term ME/CFS
btaylor

Don't assume that those assessing you will make any connection between your conditions / symptoms and the PIP activities, you must spell this out to them each and every time it is required even if that means you are repeating yourself.

Gordon

Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: btaylor49, sarah

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #202752 by Sickandtired
Replied by Sickandtired on topic Long term ME/CFS
Hi btaylor49,
I too have ME/CFS and have recently had a DLA to PIP assessment. I found a diary template on CAB website which was really simple to complete:

www.citizensadvice.org.uk/benefits/sick-...supporting-evidence/

You might still have time to do a diary to show how you are affected daily by the illness. Even if you don't have time to send it with the form you could take it to the assessment perhaps? The Optimum Health Clinic does assessments and treatment privately by telephone appointment (no need to travel at all), although it ends up being very costly if you decide to continue with treatment/tests, but you would probably have time to get an appointment before your assessment or decision date.
Another thought is, if you have any muscle wasting or weakness in your legs or hips through long term inactivity which affects your balance, ability to get out of a chair etc, there is a test called the 'TUG' test which can be done by a physiotherapist, podiatrist or maybe an osteopath, which is an indicator of mobility, disability and risk of falling (indicated by a score above 12, I think):
en.wikipedia.org/wiki/Timed_Up_and_Go_test
It's a simple test to do and if you can't find a health professional to do it, you could possibly get a friend to test you (though it would not be as credible as evidence) to give you an idea of what your score/risk would be. I had this done as part of a gait analysis test done by a podiatrist and I was surprised to find that my score was 16 (and I do indeed have falls and balance problems) and he tested my muscle strength and found significant weakness in both hips which is most likely a result of having to spend so much time laying down. This could be an issue for you perhaps? I didn't have a physical exam at the PIP assessment and the assessor has said I had no problems getting out of a chair and used that (partly) in his justifications of descriptor choices for scoring me zero on things like cooking, washing, dressing etc. so i'm glad I got this test done just after the assessment (and before the decision date) so I can send it in as further evidence with my MR request.
Wishing you all the best :)
The following user(s) said Thank You: Wonko, angel*1, btaylor49

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #202759 by Gordon
Replied by Gordon on topic Long term ME/CFS
sickandtired / btaylor

There are diary templates in the PIP area.

Gordon

Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: Sickandtired, btaylor49

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #202763 by btaylor49
Replied by btaylor49 on topic Long term ME/CFS
Thank you sickandtired and Gordon. I have the diary template from the PIP area and am working on it!!
Thanks for the other info sickandtired , I have been assessed by a physio and am awaiting his report. He mentioned my musculature had been wasting. Wish you well with your MR.

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #202770 by Sickandtired
Replied by Sickandtired on topic Long term ME/CFS
btaylor49,
That physio report should help as supporting evidence - I found in the DWP guidance on CFS/ME for DLA (couldn't find similar guidance for PIP but perhaps Gordon might know if they have updated the guidance notes to fit PIP yet?), It says:

"ME/CFS: Severe Functional Restriction ....
ADL(activities of daily living)
People with a severe level of functional restriction, who spend most of the day in bed or otherwise immobile, and who may have clinically evident muscle wasting, may well need help with personal care and preparing food. "

I am thinking that evidence of muscle wasting as a result of long term immobility would/should be evidence of 'A severe level of functional restriction' and therefore a need for help with some activities of daily living.
Good luck with it, and a big THANK YOU to Gordon who is such a trouper and works so hard to help us all!
The following user(s) said Thank You: angel*1, btaylor49

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #202800 by penthesili
Replied by penthesili on topic Long term ME/CFS
btaylor49
The NICE guidelines are also being reformulated.
Hope this article helps.
www.independent.co.uk/life-style/health-...atigue-a8081751.html
All the best for your MR
The following user(s) said Thank You: Ziggs , btaylor49

Please Log in or Create an account to join the conversation.

Moderators: GordonGaryBISCatherineWendyKellygreekqueenpeterKatherineSuper UserjimmckChris
We use cookies

We use cookies on our website. Some of them are essential for the operation of the site, while others help us to improve this site and the user experience (tracking cookies). You can decide for yourself whether you want to allow cookies or not. Please note that if you reject them, you may not be able to use all the functionalities of the site.