Chronic fatigue and completely new to this

Hi. I have chronic fatigue was has gradually become worse over the years. Being a very stoic person I have tried to cope on my own up until now, but have finally reached the end of my tether and want to claim support as I have no family to care for me. I have been freelancing at home for a few years but can no longer do this reliably and am now several months behind on the rent.

I started going to the doctor on Jan 2nd and have had one blood test, and scheduled for another in March. I have not got around to using your diary templates yet but I have been keeping a spreadsheet diary of my daily experiences/symptoms. I have made up a document listing which of the symptoms I have for the 3 main chronic fatigue conditions (ME, MS and FM) and will be showing it to the doctor on Wednesday this week. However, chronic fatigue is something that seems to take ages to be diagnosed because they have to rule out other things first.

The biggest question in mind is that now the freelancing is coming to an end I urgently need money within the next couple of months. So I was thinking I should at least sign on at the Jobcentre (although I am not fit for work in my opinion), but then worry that this might cause problems later when applying for disability support, or that when taking me off JSA and onto disability I might spend weeks in limbo without money. So should I sign on or skip that and go straight for disability even though I don't have a diagnosis yet?

Secondly, what should I apply for? I don't know if I am better off applying for the older ESA (and maybe PIP eventually) or the newer UC. I used one of those "what can I claim" websites and it said I qualify for UC - probably because of ESA being legacy. I feel overwhelmed with all the info to process and my brain just shuts down in despair.

Thirdly, having done some of those online test questionnaires about disability, I feel anxious and disheartened that they seem to be written for what you might call classical disabilities and barely cater for hidden disabilities such as chronic fatigue. I can get some points due to "altered consciousness" because of intense energy crashes that make me unable to concentrate on anything. I can also claim exceptional circumstances of self-harm by saying I'll just kill myself rather than be homeless and desitute, which is not far off the truth. But that's about it.

I feel really anxious that I'm going to sell myself short because I don't even trust myself to come up with good answers. For example, one question is whether you can prepare a meal and be aware of dangers so as not to hurt yourself. On one mock website it gave example of cutting yourself with a knife, to which I would answer that is not a problem, so no points there. But another mock website gave example of leaving pots to boil and forgetting about them, to which I would have answered yes I've done that before, and thus got some points.

I get the feeling that these are questions that are supposed to be answered from a wise point of view rather than a logical stance. For example, can I walk more than 200 meters? Absolutely. I walk my dog about 1.5 to 2 miles per day (over two walks), but I pay the price for that in terms of various aches and pains over my body and exhaustion that is moderate to severe. Often I walk the last few hundred meters in autopilot zombie mode just plonking one foot in front of the other to get home. Do I say I can't do 200 meters because it might hurt, or say I just ignore the discomfort and walk 200 anyway? I don't know what's expected of me in answering. I feel like I need a mentor or assistant to guide me on how to answer these tricky questions.

Sorry for the long post.

Hello

I have CFS and FM sadly along with other things. I too was in your position and had to stop work in 2014. I was told when I was eventually diagnosed by a consultant at the Chronic Pain Clinic that it was FM and CFS. Tbh I went through several hospital investigations to rule out more sinister prognosis.

I can only speak for PIP as I am unable to claim any means tested benefits as I have quite a good Ill health pension.

I didn't know about benefits and work before I applied for PIP in June 2017 and was awarded 6 points and 4 respectively. Stayed the same on MR. At the tribunal I received 11 points and 10 points for mobility under the MH criteria.

What to remember is 1. Try to get a firm diagnosis of CFS. FM is a debilitating illness that causes Chronic Pain in 6 or seven areas of your body. 2. Make sure you go through the guides on here. It'll help you identify and document how your CFS affects your daily living and /or mobility. A GP won't be able to fully diagnose CFS without first excluding other causes for your symptoms.

I'm lucky and I have excellent support from my pain management clinic my GP and my Psychology department who have written lengthy support letters to the DWP.

I used the guides on here in September 2019 to put a change of circumstance in to the DWP. I received a F2F home assessment without any doctors letter supporting a home visit which I had on 10th Jan 2020. My assessment report was sent to me just over a week later.

I'm not sure about ESA or UC tbh. But if it is anything like PIP, just make sure you concentrate wholly on how your illness affects you on a daily basis when undertaking the tasks in the questions. Don't rely on signs and symptoms of the illnesses, talk more about how the symptoms affect you and their impact on you. Give examples.

I do wish you well and good luck with any claim you make. Because of these guides on here and based on my recent HP report, i will thankfully not be going to MR and Tribunal on this occasion. I'm just awaiting the confirmation letter from DWP.

Kind thoughts and best wishes to you. Xxx

I phoned the Gov number today to apply for New Style ESA and the woman said if I want help with rent then I need to also apply for Universal Credit. She said I should go onto their website, apply for UC online, then log back in and add a "service issue" journal entry and specify that I want to apply for a dual claim for both UC and New Style ESA. She said the Jobcentre will then contact me to arrange an appointment for me to go in and claim both.

What do you people think? Does that sound legitimate or is there a trick there? I asked a friend who also claims ESA and he said I should be careful and ask around because applying for UC might prevent me from asking for ESA. To me the dual-claim makes sense as Housing Benefit has been abandoned for new claims, but I just want to be sure this isn't one of the many dirty tricks they play to minimise the assistance you receive.

Dear Erik,
Sorry you are feeling so ill, CFS/ME is rotten to live with. If you can get support & qualified advice before you apply for ESA/UC this would be a big help so you can prepare carefully.
It may be wise to work out what care & support you receive, help from friends, family & neighbours will count.

Please be aware that at assessment you are likely to be asked if you have any pets. If you can reliably feed,care & walk a dog this will be held against you! Despite the well documented health benefits of having a dog, DWP does not yet recognise Emotional Assistance dogs or the health benefits of dog walking. Does your dog have any recognised training as a Support dog or have you any plans to do this? Hint.Hint. Is there someone who helps you look after your dog when you are too ill to walk & feed him/her?

Ability to drive a manual car is also a thorny question, as it is interpreted as a higher cognitive skill. Again reliability is key. Again you seem to be already compiling a diary.
Collecting good medical evidence including copies of GP notes & hospital records will stand you in good stead.
You are usually only given about 3 weeks to get the forms in. You may have to go for a 'work conversation' appointment first.

I suggest you read the guides & what questions you will be asked at an assessment to prepare yourself for these assumptions. You have to fit the descriptors rather than the descriptors fit you.
Always send correspondence via recorded delivery, keep copies & records of phone calls.
Best wishes
Maggie