PIP MR for ME/CFS after Zero points

I applied for PIP in December and had my assessment about a month ago, which was refused in a really strange subjective and accusational manner (but apparently a lot of refusals are like this).

I have had ME for two years and have recently discovered via a private doctor that I probably also have Lyme disease, but since the NHS/Gov don't really recognise anything more than acute Lyme it's probably better not to mention it and term it as CFS and Fibromyalgia? I did mention it in my assessment but they were clueless and noted it as Limes anyway.

I called to appeal my decision on the 4th of this month and am completing my MR now to get back to them for the 4th May, so any last minute advice would be appreciated as I will edit and post in a few days.

Key Points from assessment and medical report:
- In Assessment I described Good and Bad days but colloquially described the day as a 'bit of a bad day' to excuse my slowness in answering questions. They have used this to say that day was a bad day and I looked capable of everything. How can I contest this?

- They have said 'You did not look tired' and that my mental cognition was fine. However I felt so awful that day after the journey there and sitting up in waiting room and assessment for one hour but have no evidence other than my own word on this.

- They've questioned my use of Dosette box to manage medications as I am only on one prescription at a time and some temporary. However I also take a number of supplements recommended by doctor and nutritonist. Would I need written evidence for these? E.g. Vitamin D, B12 etc

- They have questioned if my Mum helps me make financing and budgeting decisions because I have my own bank account, however I run everything past her and make joint decisions due to making errors before e.g. going into red, not paying bills.

- That I did not appear breathless, fatigued or uncoordinated, put my coat on myself, crossed my legs while talking. When the reality is that I was very off balance and had to walk very slowly through to the assessment room, trying hard not to bump into the assessor or door frames etc. - but again this is only my own word?

- That I am under the care of my GP with no regular specialist input, however I was discharged from the CFS clinic as it was too far away and there are no other treatments for ME/CFS. Still on the books of a rheumatologist but she literally said there was nothing else they could do at this point.

- ''You advised on a good day you can take a bus to make a journey and you can go to the local shop for coffee with friends'' - I actually said that I couldn't take a bus and haven't for two years, and that I can go for a short coffee or meal but have to be picked up from the door.

- ''I decided you can move more than 200 metres'' - I told them that this was accurate on a good day 50% of the time but not for bad days 50% of the time.

So much of the application process is based around objective criteria yet their decision is based on subjective criteria and assumptions, can anyone help?

I've worked out that I should really be awarded 8-10 points

Thanks for your reply Gordon, I take on board your points. Good/bad days is the advice that I have always come across online to describe capability but you are right and I should maube include an average/median day.

A few other responses...

- You talk about running budgeting past your mother but you don't detail a specific requirement for her assistance, what would you do if her help was not available?
The point is that I am not able to manage living finances independently as I was living alone two years ago and found it difficult to plan and budget which resulted in running into the red and missing payments, increasing debts etc.

- When they said that you did not look tired, what activity was this in relation to?
That purely in relation to their own subjective visual assessment of me on the day, even though I was leaning on the arm of the chair in the room and finding it hard to speak to them as my mind was going foggy.

- Why can't you take a bus?
In my current situation I am not able to as the bus stop/station is too far away. Even if it was outside my house I could only make a single short journey as I can't sit up for too long and don't tolerate the movement well - resulting in payback/crashing.

Chris D wrote: refused in a really strange subjective and accusational manner (but apparently a lot of refusals are like this).

They are, they are - especially when the HP has made assumptions about your condition, which they like to do with ME. (My caree has ME/CFS, so I know where you're coming from)

Anyone with any sensitivity for the English language would realise that 'a bit of a bad day' isn't as bad as 'a bad day', especially when spoken by a Brit! Appearances are of course deceptive, but you don't have much else for them to go on with ME, unfortunately. The DWP's rules do require them to take fatigue into account - did you stress fatigue? How much did you stress variability?

"They have said 'You did not look tired' and that my mental cognition was fine." Because of course they are mindreaders. GRR!

"They have questioned if my Mum helps me make financing and budgeting decisions because I have my own bank account, however I run everything past her and make joint decisions due to making errors before e.g. going into red, not paying bills."

Typical ME brain fog?

- ''You advised on a good day you can take a bus to make a journey and you can go to the local shop for coffee with friends'' - I actually said that I couldn't take a bus and haven't for two years, and that I can go for a short coffee or meal but have to be picked up from the door.

That certainly needs to be challenged, if what the HP reports is a direct contradiction of what you said. Probably won't do you any good at the MR stage, but hopefully at the appeal ...

"So much of the application process is based around objective criteria yet their decision is based on subjective criteria and assumptions." I'm afraid so - and an HP's assumptions appear to be worth more than actual facts presented by you. You'll need to try and undermine those assumptions when you get to appeal. I was advised that although you need to stress the variability you also need to err on the side of a "bad day" rather than a good one.

So, other thoughts: have you tried the ME Association/Action for ME websites for advice? The MEA had a useful publication on filling in the PIP form, I think it was. Also, B&W has an appeal submissions publication which contains a sample submission for ME/CFS. Probably worth downloading, as we all know that the MR is merely a hoop we have to jump through on the way to lodging an appeal.

Also, if you weren't going to do so already, I'd strongly suggest getting your papers mailed signed-for. We were told that our appeal had been received late, but fortunately I had paperwork contradicting that! Also, bear in mind that the date you need to get your MR in by is over the bank holiday weekend, so you'll need to get it in several days ahead of that for safety.

Best of luck, and we'll see you again no doubt when you're putting in your appeal.