Hi, I’m looking for some advice / experiences from people who’ve gone through the ESA Work Capability Assessment process (Support Group vs WRAG), especially with ME/CFS. (In England btw.)
Please be kind. I’m just feeling quite overwhelmed and would really appreciate hearing others’ experiences. ❤️
Background: I have ME/CFS with significant post-exertional malaise (PEM). I experience both good and bad days. On bad days I am completely bedbound, unable to tolerate any kind of stimuli. I often can’t even look at my phone or answer it. On better days I might manage a few small activities, but these days are limited and unpredictable.
Because of this, I have to plan everything very carefully. Even short phone calls or appointments require weeks of preparation and pacing beforehand, and recovery afterwards. Often I’m having to choose between basic things like having a shower or taking a phone call. I generally can’t do both. So I’ve stripped my activity back to only absolute essentials in order to try to stabilise my baseline (which I’m still working on with my ME specialist.)
I was dismissed from my job in November 2025 on ill health capability grounds, and applied for New Style ESA around that time. I completed the claimant commitment, then didn’t really hear anything until I was given my Work Capability Assessment.
My WCA was on 10th April and only lasted about 20–25 minutes. The assessor didn’t go into a lot of detail and said she had enough information after asking about walking. I received a text on 13th April saying they had received the report, but haven’t heard anything since. As I’m not on UC, I understand I’ll just receive the decision by post as I do not have an online journal (as far as I am aware.)
Today I received this text out of the blue:
“Remember your appointment for your follow on for ESA on 07/05/2026 at 3.50 PM at on the phone. If you have any problems, call 0800 169 0190 as failure to attend will affect your benefit. For more information visit www.gov.uk”
I hadn’t been told about any appointment before this and have no idea what it’s for. Luckily I am having a good day, so I rang that number and spoke to someone who thought it was just a routine follow-up/check-in and not related to the outcome. He pushed the appointment back and added a note that I need reasonable adjustments, and said I may receive my decision before then anyway.
Even though he was nice, I’m now really anxious about it!
I genuinely may not be able to answer the call regardless of when it is. Even a short phone call can trigger PEM and leave me unwell for the following days (this happens most of the time).
I’ve made it clear multiple times that I can only attend absolutely essential appointments, so what I was really trying to understand is how essential this appointment actually is. I explained this (politely) on the phone and asked if it could be cancelled, but he said he could only push it back. He was understanding and said he was adding a note about reasonable adjustments.
The difficulty is that even if it’s pushed back, there’s no guarantee I’ll be able to take the call. For me, phone calls, no matter how short or informal, often result in a crash afterwards. I completely understand that some appointments may be necessary (for example if they need to clarify important details), but if this is just a routine ‘check-in’ I have to prioritise my health. But of course I do not want to risk jeopardising my benefits.
I’m also worried that in a few weeks I’ll be facing the same issue again eg. needing to phone AGAIN and ask for it to be pushed back AGAIN, when making those calls in the first place can cause PEM if that makes sense?
I know it might sound dramatic, but this is my reality now. Pushing through non-essential activity has previously caused a life changing decline in my baseline, so I have to be very careful. Because every appointment has a cost in terms of worsening symptoms, I have to weigh things up very carefully and only attend what is absolutely essential. For context, I was bedbound for days after my WCA and had to prepare for weeks beforehand just to attend that.
I’m also worried this might mean I’ve been placed in WRAG and this is some kind of work related contact, even though I’ve explained I cannot increase my activity at all without worsening my condition.
I’ve had really difficult experiences with PIP in the past which has made me quite anxious and distrustful of the system, and this whole process feels like constant appointments that each take something out of me and impact my baseline.
Has anyone had something similar happen eg. getting a ‘follow-on’ appointment text while waiting for their decision? Did it end up being relevant, or was it cancelled once a decision was made?
Is there a way to formally request reasonable adjustments (e.g. not being asked to attend non-essential appointments or phone calls) without having to keep phoning? I’m trying to convey that I’m simply not at a stage where I can take on any additional activity right now, even something that might seem minor, without it affecting my health. (No doubt I will crash even from writing this, but I’m doing it because I’m now on edge and hoping for reassurance.)
Anyone out there with ME/CFS in a similar situation to me who would be willing to share their experience and/or offer me some reassurance?
Sorry if I’ve vented or repeated myself. I’ve never been through this process before. I’m anxious about my health, but also about doing something that could put my financial security at risk. It’s been really hard adjusting to how much this condition has changed my life, and even though the people I’ve spoken to so far have been kind, each appointment and each time I have to explain my condition takes more out of me.
Thank you!