How hard is it to get help with income/benefits with M.E? Based in Barnstaple, North Devon.

It's not just your area the whole country isn't really that great for support and Devon does have me/cfs clinic also support groups to help.

Your manager doesn't have to be understanding but what you can do is use your rights this comes under a disability so you have a lot of rights and reasonable adjustments have to be made whether manager likes it or not.

Getting benefits is very difficult and tends to be a very long process (most people have to go to appeal hearings and if you have never been to something like me/cfs clinic they will use that against you) the other thing is the money is very poor.

GP shouldn't really give advise like that he is being very negative he should be helping you to understand you need to do some life style changes and mentally stopping work is a very bad idea (if you currently are full time but struggling shows you can do some work so by stopping is going backwards)

 

It is very hard to get in America. I lucked out because im 55 yrs old so im closer to retirement. Plus i tried everything at the doctors office to prove thst i was trying to get better. Request b12 shots, antivirals, lab tests for viruses and lymes disease. Everything, because they will request your records. See a infectious disease doc or rheumatologist. Keep a pain or cfs journal. They want all the documentation you have to prove you are ill. Ive had it 27 years and i got up in my attic and found the receipt of the first doctor that diagnosed me in 1990. Not sure what all they read but my sincerity and past employment reputation helped. Plus i think having some kind of degree or schooling helped. I mean, why get a degree if you really dont want to work and fake an illness. I am a divorced mom of 2 teen girls so i was desperate to get it! My mother is deceased and my father is older and loves his space and privacy. So i really had no where to go for help. Dating is just not an option when youre chronically ill. I used to code medical records in a hospital uears ago but quit after my kids were born and being sick. So i would've had to be retrained if i wanted to do it at home , laying down with a laptop. No way!! My brain couldnt tolerate even that or transcription. When youre sick, youre sick. Good luck. It still took me 2 years total from time i applied to time i had a hearing. But if you say youre bipolar you can get it right away!! I just couldnt lie. Tempting tho if it saves your life. Ugh!

Oh and get a representative, lawyer or disability advocate. You dont pay till you win. And over here, mecfs isnt on the acceptable disabilities bluebook!! So you almost have to put depression as a primary or secondary diagnosis! But who isnt depressed with this crud! Take care!

Do you work for a big employer? If so talk to the Occupational Health department or HR they will sort out the flexible working for you. In these situations you need to go around the manager.

if your GP signs you off then company has to pay sick me and OH have to phase you back into work when you are ready,

i didnt get any any help from my manager until I went to OH. They are there to,protect you from your manager and make sure the company abides by the rules which your manager is unaware of, best of luck 

I'd say get all the adaptations and changes you can at work. WKnight has good advice abut going through Occupational Health dept if your firm has one. And unions can be brilliant too in supporting their members to get adjustments. Legally, the firm has to make reasonable adjustments for people who are chronically sick or disabled.

It might seem negative advice from your doctor that you will get worse, but it is much harder to heal when you are working full time. And I am sure you are feeling you WILL get better, given time. That hope is part of healing too.

There's a UK facebook page that might help, if only to communicate with others in the same situation as you, so you don't feel so isolated going through this. It's called UK M.E. & Chronic Illness Benefits Advice Group, and you have to request to join as its a closed group (so only members can post). And #MEAction in the UK has another FB page, a bit more campaigning.  Action for ME.org.uk has factsheets about applying for various disability benefits, and Disability Rights UK also has really good advice about how to fill the forms in and the best replies to give. CAB too I think can advise.

Good luck with it all - you will come through this eventually! You have a good start with a GP who has, presumably, diagnosed your ME.

Hi Sarah-loui,

My friend worked full time and ended up with CFS/ME after a virus. They tried to go back to work and it didn't work. The company said they could only return full time which, my friend could not do. Like wknight says OH are there for you. With my friend they stated that my friend was not able to return full time and that different duties may need to be carried out. The doctor re newed sick note after sick note and the company kept coming to my friends house (I was there as intermediary) for 2 years before agreeing with my friend that they couldn't return. My friend wanted to just resign as it took energy to keep emailing her employer and have meetings but I encouraged her to stick with it. She was able to get ESA, you have to show you are too ill to work and as I say, my friend's employer refused part time. Which, in fairness, wouldn't have worked. She also got PIP. The interviews are not set out to discriminate against people with fluctuating conditions like ours. How ever, if you go in explaining only how well you are on good days, you won't necessarily qualify. Your doctor seems on board with how hard work is becoming right now and I disagree with miller Jones saying your doctor was wrong for the advice they gave you. I believe yourself and them are the only ones capable of deciding what is best for your health. Miller Jones did say there's ME support in Devon and I would definitely ask your GP to refer you to them.

I can't work due to my CFS/ME and take my hat off to those who can. Wknight has posted here in other threads and his story is quite amazing at how he got back to health by pacing and got back to work. My story is that I had just got a new contract before I got CFS/ME that I could never take up. I also had two interviews for new work too. My condition came due to a car crash and I had a fractured spine so, my inability to work was obvious. I hoped to return but never got my energy back. I have been exhausted since. But, I do not feel not working has a negative effect on my mental health. I'm not well enough to do anything about my position at present and have learnt to be more gentle with myself. I have children and used to feel so guilty not being able to be the mum I was. Guilt doesn't help, caring for yourself does.

My advice would be, if you are crying at work because you feel too ill with CFS/ME, something has to change. Check out OH, ask for ME referral and look after you.

Beverley

I am also in Barnstaple and the support in this area (or maybe all areas) is pretty terrible.  I was rejected for CBT and told to try the local charity counselling because they presumably didn't understand the condition?  I do wish there was some kind of Devon support group.