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TOPIC: [First Post] ME/CFS and DLA

[First Post] ME/CFS and DLA 7 years 3 months ago #13615

Hello everyone :)

I'll try and keep this as short as possible!

I have been symptomatic of CFS for 4 years officially diagnosed by a neurologist 2 years ago.
I was mild, could work part time and look after myself and my teenage daughter if I broke everything down into smaller chunks rather than blitz the housework in one go.

I've had 3-4 relapses with my CFS each one requiring me to have 4 weeks off work.

I suffered another relapse in August of this year and it is the worst one and even though I have been off work since 8th August I have deteriorated considerably.
I'm now housebound unless someone is with me due to pain, fatigue and confidence (worried I'll fall, get too tired and not be able to get back home etc).
There are days (which are increasing in frequency) I can't have a bath or shower or wash my hair.
Yesterday I was given crutches by a physiotherapist to help support me when I walk, which isn't that often because I'm in pain even at rest.

My GP is incredibly supportive although my employers aren't. I've had 2 OH meetings at work, the first in April after a separate CFS relapse and she strongly recommended I change to lighter duties which was totally ignored and not even mentioned to me.
My second OH meeting was last week and she said she will declare me unfit for work and wait to hear from the relevant person at my work to contact me, which 7 days later a phone call or letter still hasn't materialised. So currently I don't know if I even have a job.

To be blunt I feel there is no chance of me going back to work now, or ever. My GP signed me off for 3 months two weeks ago.
I have shown no signs of improvement in the months I've been off work and still feel I am deteriorating.

With my brief history out of the way, my questions about DLA:
It says I have to have had the symptoms at least 3 months and it is likely I will still have them for at least 6 months.
When I first rang into work sick it was mainly pain and fatigue, I was still mobile and able to keep up my personal care although less frequently. Will the minimum 3 months start from when I've been off work, or the time I started to need help with personal care and walking?

How on earth do I prove to them that I think I will have the same problems for at least 6 months? It's common knowledge ME/CFS can be variable and relapse recoveries are possible. I feel like I'm going to be declined just on that simple fact without anything else taken into consideration.

I'm just absolutely petrified about the whole thing. I paid my membership today before I apply so I'm fully armed from the start but I can't even pluck up enough courage to ring up to get a form sent to me.

I've been reading this forum all day and looked back 25 or so pages to read posts on successes and refusals and people I feel are way worse than me are getting refused is making me lose all hope before I even start.
The medicals seem more like mind games and I have bad brain fog and I get so forgetful and flustered and the thought of going through some of the horror stories on here is too much for me to handle.

The whole thing is just so daunting for me and I'm petrified!

Any advice/tips/support any of you can offer me would be fantastic!
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Re:[First Post] ME/CFS and DLA 7 years 3 months ago #13620

Hi There,

Just read your post.

Sorry to hear you are going through such a difficult time. It sounds like, for you to get your health back, you will need to forget about work for the forseeable future. The condition you have is chronic and gets worse if you continue to push yourself. You need to bring yourself back to ground zero and then build up from there.

Of course you will then have to face up to the benefits system; and I think you have come to the right place. Remember you have a chronic illness.
Once your SSP period has elapsed, you should then claim ESA. Before that I would seriously consider ordering yourself a DLA claim pack. This process can be as stressful but becomes less so when you realise you are getting top quality guidance. These benefits could be critical in you bringing about an improvement in your health.

I have had CFS since 2005 and although I have never claimed DLA I believe I should have in the first two years. My health has improved greatly, although I am still on Incapacity benefit. I am part of a ME/CFS group, and most of the people in the group receive dla. Their symptoms are not unlike yours.

Take care.

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Re:[First Post] ME/CFS and DLA 7 years 3 months ago #13622

  • lavenderlady
Hiya Sassy:)

First of take it easy. Take one step at a time.

Familiarise yourself with this website. Read and re-read a bit each day.

Download all the DLA questions on the DLA questionnaire you will eventually be filling in, think about them and make a list of your answers on a sheet of paper.
Keep reviewing your list and keep going over the questions writing down notes etc

Only send for a DLA A/f when you are familiar with the questions, have thought about them carefully, and also are familiar with all the DLA info on this website.

Take a photocopy of your blank A/F
Do a draft first, Read it, review it.
When ready fill in form.
Take your time. Don't rush.
Don't let anyone write on your form

REMEMBER to take a photocopy of your completed a/f and send it either recorded delivery or special delivery.

If at first you don't succeed with your DLA app, try again 6 months later.

I wish you every success

:) :) :)
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Re:[First Post] ME/CFS and DLA 7 years 3 months ago #13633


Check out this from the House of Lords



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Re:[First Post] ME/CFS and DLA 7 years 3 months ago #13637

  • pata1
  • Retired Nurse & Former Moderator.

Also, have a look in the Spotlights area of the Forum HERE and you'll find the Disability Handbook, and the A-Z of medical conditions.

ME/CFS are in both links and are used by Decision Makers and DLA tribunal members to help them assess entitlement to care and/or mobility needs.

Also, if you type ME/CFS in the 'Search Forum' at the right hand side top of the page and click the Go button it will bring up all posts on this topic.

My husband Jim is a former DLA tribunal member, and I used to accompany him to all tribunals as his carer, and many claimants with CFS/ME refused DLA by the DWP had an award made by a tribunal.

Hope this is of some assurance.

PLEASE READ THE SPOTLIGHTS AREA OF THE FORUM REGULARLY, OTHERWISE YOU MAY MISS OUT ON IMPORTANT INFORMATION. Nothing on this board constitutes legal advice - always consult a professional about specific problems
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Re:[First Post] ME/CFS and DLA 7 years 3 months ago #13638

  • boris1
Charlie Nott France wrote:

Check out this from the House of Lords




Charlie thanks for that it's really useful and informative.
Do you have a link to the WHO thingy about cfs/me?
I've been searching for it but with no success.
I'm trying to build a very strong case for my ill health retirement appeal and they're not likely to grant it to me without one big fight so I need hard core evidence that they'll find hard to dispute!
Many thanks. :woohoo:
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