CFS (chronic fatigue syndrome) Help required

Purpletess

HI
I have just been diagnosed with CFS and have been that is classed as a disability,i currently work full time but am finding it very hard. I was just wondering if anyone has any knowledge of any benefits or help i may be entitled to either while working or if i have to give up. Tried talking to the benefit office but the way they explain things is so complicated lol. I would like to know if i can get any help and if so how,where and what really.
Hope someone can help,all the best
Purpletess

tattoed_bum

hi there may be small chance that you could claim disability living allowance but this will depend on what your care and mobility needs are

peskie_pixie

Hi

Have a look on the Disability & dosh forum here and post on there too.

There are a lot of people on there who have CFS/ME and they may be able to advise you based on their own personal experiences.

As mentioned in the last post, DLA may be an option, but as stated it does depend on your care and mobility needs

mardatha

I have ME and cant work at all, everybody I know with this illness is also unable to work. Although everybody is different.It is very hard to get help because they say its a mental illness which it isnt.Some people try to cut down hours and work part time for a bit, maybe somebody who did this can advise you--my job didnt allow for that and so I had to leave. One thing I can say, is don't push yourself until you're exhausted. I did this for a year and made myself much worse, so that I had to stop work and have been off ever since.Best of luck x

Mojisola

Nutz666 wrote: »

DLA is not awarded on diagnosis but on how illnesses effect you. CFS is quite common compared to ME as ME is usually diagnosed through brain swelling and can be proved via tests whilst CFS can not. DLA is difficult to be awarded just for CFS as many people still think it's a pschological disorder rather than a physical one. Many people live normal lives with CFS and it is mainly treated through exercise and pain clinic if extreme.

Have you got any references for this? Do you really know anything about ME/CFS? The worst thing you can do for ME/CFS is exercise - it will make you much worse.

The NHS is using the term CFS for ME - it's very unusual to find a doctor willing to use the name ME.

mardatha

in my case "successfully managed" means spending four fifths of my life lying on a couch watching the clouds. It doesnt feel very successful to me.

Mojisola

Nutz - just because the term ‘encephalomyelitis’ means inflammation of the brain does not mean that people are diagnosed with ME by tests that show brain swelling. One reason that doctors don't like to use the term ME is because it has never been shown that people with ME have any inflammation in their brains. It's why there was a campaign to change the name to Myalgic Encephalopathy which describes the illness more accurately and it's why the NHS uses the all-encompassing CFS.

I feel that if you knew anything personally about ME you would understand the major discussions that have been going on for years about ME - whether it is a mental or physical illness, and whether the "appropriate treatment" should be CBT and graded exercise or pacing.

Most people with ME do not agree with the NHS's current thinking on how to handle their illness. Most of us are left to find out for ourselves how best to manage our lives.

Have a read of these articles -
https://www.drmyhill.co.uk/article.cfm?id=381 - "CFS - The Central Cause: Mitochondrial Failure."
https://www.drmyhill.co.uk/article.cfm?id=158 - "CFS - Psychological or Physical?"
and any of the other CFS articles on the site to gain some real knowledge about the illness.

Horace

Also you could approach access to work (details can be found on the jobcentreplus website https://www.jobcentreplus.gov.uk) - Access to Work will come and assess your workplace and make recommendations and maybe even pay in full or part (your employer would pay the rest) for any reasonable adjustments to keep you in work.

One of my friends has ME and is self-employed, he has received an office chair from Access to Work and he works when he feels fit currently he works 3 days a week.

HTH

Mojisola

Purpletess - if you have a support group in your area you may find it helpful to talk to them. Talking to others who have more experience of managing this illness does help. The national charities have helplines - https://www.meassociation.org.uk and https://www.afme.org.uk so they will be able to advise you.

Marsh_Samphire

If you do apply for DLA, I would totally recommend looking for a disability advice centre near you. Look on https://www.dialuk.info as the assistance I got with filling the forms in was invaluable. I get the lower amounts but the money enabled me to drop a day at work and it has made a real difference to my life. I work 4 days a week now, have Wednesdays off and that break helps me get through the week. Luckily I have family help at home for shopping, cleaning, cooking etc as I'm still too knackered in the evenings to do anything, but at least I can get out of bed at the weekends, which I could not manage when I worked full time.

loopy_lass

dla!! HA..... i tried, got no where even tho i had a DD to look after, they said if i could make a basic meal in a microwave for myself that was independant enough for them... i asked about my DD and they said "if you are telling us you cant look after her then ring social services".

I did very gradual graded exercise, now 4 years on im only just managing to work 30hrs a week, but basically sleep all the time im home... its a struggle, but cant get any help.... my daughter is now 18 and they say she has to look after me..

hth loops

loops