Chronic fatigue and completely new to this

Hi Maggie,

Thank you for your advice. I wouldn't know where to go for support in my town/area and I don't have time to do it unfortunately as I urgently need money for food and the landlord is not happy about rent arrears and wants a claim started promptly. So I have already opened a claim online for UC (on the basis of disability) and will be attending the Jobcentre on Monday for my new claim appointment. I will give them a completed form for New Style ESA as well but I am unlikely to get that due to not having made much NI contributions in the past couple of years. Hopefully if the ESA claim fails they will fall back promptly to paying me UC living costs instead, especially as ESA is simply deducted from UC anyway?

My dog is 13 years old now and according to the UK Support Dogs (a charity that provides training) website he is far too old to qualify as they only do very young dogs. I suppose the fact that he contributes not just to my mental health but also to my physical health (and the heavily criticised current NHS guidelines for CFS/ME specify limited exercise as being allegedly beneficial) won't make any difference? My dog also causes a few people to interact with me whereas without him they would ignore me, so one can reasonably say he boosts my social engagement too, and isn't there questionnaire criteria about ability to interact socially?

This dog issue makes me very nervous about my health diary because I mention his walks daily in that, and I mention the effects of how I feel during and after the walk to describe how my condition affects me. I could sanitise my diary but that would strip out most of the useful stuff. On the majority of days the effort of getting dressed makes me tired and a dog walk makes me completely exhausted and in pain so I'm certainly not in a fit state to work.

I can say my neighbour helps walk him when I am feeling too bad to do it, but that is about all. On occasion I am so tired I go to bed without feeding myself or him, and a little intermittent fasting is not a bad thing, but one could argue this does not count as being reliable?

I don't have a driving license, so that's not an issue. Not sure I'd trust myself on the road anyway - nearly killed myself twice on a bicycle!

I now have a fit note (Jan 2020 to end of Mar 2020) from the GP that states CFS as the condition but I have yet to see the specialist (doing the referral paperwork apparently) and receive any formal diagnosis or build up a significant medical record on it.

Regards,
Erik

Hi Eric I too have CFS,FM,ME, Worked all my life and totally crashed a few years ago and was diagnosed after exhaustive blood tests and referred to M.E NHS services. I was also seen by a hospital consultant who specialized in M.E. CFS . I seem to go downhill after swine flu in 2010. I am in the support group and enhanced PIP. I am hoping to do permitted work with support of the medical professionals who have been very helpful but this is a long process for me and I know my limits and still have to take great care and my work would allow me to do this. I would really advice you to look at Action For M.E website and the M.E Association for help with the DWP. They really help explain how to fill in the forms with this debilitating illness. If you put down you walk 200 metres you will have no chance of scoring for the mobility component. If you have to keep stopping or get symptoms you must say you cannot walk more than 20 metres without pain, fatigue etc etc reliability, repeatedly and in a timely manner, words to that effect, so the decision maker and assessor can clearly see you have to stop and the reasons for that. It is very sad to have to explain it this way but they can try to catch you out , I know. I hope this helps and this forum is great for help. Gordon has been very very helpful. kind regards

Thank you for your advice Ticktock. If you are willing to offer advice on how you personally approached the disability questionnaires and assessment then I would be glad to hear of others' experiences and to consider if and how it might apply to my case. I don't know what the forum policy is on sharing contact details but I'm happy to chat here or otherwise.

Yes, I've read through the Benefits & Work guide book for UC and ESA and have become aware of the difficulty in applying criteria to chronic fatigue and some of the assessment dirty tricks. I don't know in what ways Gordon helps people, but the person who was kind enough to pay for my membership here did recommend Gordon as being a very helpful fellow. I am aware of the Action for ME website but didn't know they have ESA guides so I will have a look for that.

My dog stops to sniff every 10 meters anyway so to say I keep stopping and resting isn't a lie. Much of the time I do get pain or fatigue within 20 meters of leaving my front door although I don't let that stop me, I just masochistically push on - hell sometimes I've felt fatigued even just getting dressed after sleep. But as has been pointed out by Ticktock and the B&W guide, whether you actually stop isn't so much the point but whether you can do it in a timely, reliable and pain-free manner, which is not the case for me.

Ticktock, if you do permitted work does that reduce your benefits? Small doses of productive activity could be useful in providing mental stimulation and boosting morale, although it's very random and limited as to when I would have the energy and focus to do that. Today for example, my brain fog is terrible today and I have been making even more typos and failure to use a keyboard properly than usual. I’m really struggling to compose sentences and keep getting my letters scrambled up as I type, and a few times even omitting entire clauses of sentences without realising until later. It’s like being constantly drunk or dazed or something.

On most days I have to obsessively proofread everything I type and even then still make mistakes - thanks goodness many forums allow you to edit a post afterwards. It takes me hours to do emails and deal with forums.

Thanks, Erik

ticktock wrote: Worked all my life and totally crashed a few years ago

I forgot to say, same here. I'm 43 now and this started about 10 years ago with seemingly random symptoms several times a year that I dismissed as getting old or having off days. But over the years it has become more consistent and severe. By about 2016 I couldn't ignore it any more and knew roughly what was going on but stubbornly persevered. After this Christmas the fatigue reached new lows and the daily fibromyalgic type pains started so that's pretty much the end of working for me. It's quite something to go from being someone who was a superhuman Jedi whizzkid in school to being like a 90 year old cripple with slight dementia. These days I just laugh it off and and do the best I can.

Erik

Hi Erik. I have had ME/CFS for over 17 years. Action for ME and The ME Association both have advice which is specifically tailored to people with the condition who need to apply for benefits. I have found this advice to be invaluable. I first applied for both ESA and DLA but was turned down for DLA without an assessment. I didn't need the money at the time because my husband had a job. After a tribunal where I appealed against having my ESA stopped one of the tribunal turned off the microphone and suggested I apply for PIP. I did and got it without having to appeal and have had it for five years. I'm afraid you really have to fight but it's worth it. Always take someone to any assessment and have them make notes. Sadly, assessors or DWP staff sometimes change what you say and it is best to have a record of what you actually did say.

I'm currently preparing my UC work capability questionnaire and I see on the form it says, "Remember - only send us copies of medical or other information if you already have them. Don't ask or pay for new information or send us original documents."

This seems to be contrary to the advice by Benefits & Work and Action For ME, who both say we should try asking our GP or healthcare professional for a supporting statement about our condition. What am I to make of this? Just more trickery by DWP?