I won 10 years’ PIP with M.E.

PIP ME photo
Photo sent by “Pamela”

Pamela* in Yorkshire writes:

I’d really like my PIP story to be included on your website. Things are just so dire with benefits and I want to share my experience to try and help others as much as possible and publicize the ME Association meeting with the government minister.  I read the PIP stories on your website several times when I was in the thick of it, to try and work out what might happen and to give me hope — they were just so helpful.

October 2019  — my first email to WinVisible


I wondered if you could give me some advice please. I’m currently being transferred from DLA (high care, high mobility) to PIP and am trying to get a paper-based assessment.

“On my PIP2 form I’d asked for a home visit assessment confirmed by both my doctors, as I was unaware then that I could ask for a paper-based one.  A week ago I received an appointment for a face-to-face interview at an assessment centre which I am in no way well enough to attend. I have severe ME and have a number of problems — apart from fatigue and physical problems, I have difficulty speaking, brain fog and severe noise sensitivity which makes even a home assessment problematic.

“The ME Association met Justin Tomlinson MP, Minister for Disabled People, Health and Work in June 2019, and assessments was one of the things that was discussed.  And as a result of which Justin Tomlinson asked the ME Association to forward to him any cases where a home or paper-based assessment was refused without good cause.

“Based on this, and the information on your website, I decided to ask for a paper-based assessment and wrote to IAS (Atos) making a formal request for ‘reasonable adjustments’ under the Equality Act 2010.  I gave specific details of the problems I would have with a face-to-face and how my problems currently affect my contact with my doctors, and asking for a written response from them. I also referred to the meeting with Justin Tomlinson in the letter and contacted my MP, who has written to the DWP.

“In addition, I got a further letter from the private doctor I see, asking for exemption.  She hadn’t heard of this — I forwarded your leaflet to her and she is interested to know the outcome and whether to suggest it for other severe patients.

“I haven’t as yet heard anything from IAS although someone has been trying to phone me which I suspect is them — I don’t normally use the phone but I have explained all this on my PIP2. I’m unsure what to do if they cancel the appointment at the assessment centre but send me one for a home visit instead. I’d prefer to hold out for a paper-based assessment  and am thinking of sending a formal letter of complaint against their failure to make reasonable adjustments under the Equality Act in the event of this happening.  But I am worried about how this will impact my claim, particularly as I’ve read they don’t like awarding anything for mobility without seeing the claimant (both my doctors have given details of my limitations in their letters, e.g. that I can’t walk more than 15m). I do think exemption from assessments is a really important issue though.

November 2019

“I managed to get the assessment cancelled — it was at an assessment centre — and am waiting to hear whether or not they will do a paper-based assessment. I made a formal request for ‘reasonable adjustments’ under the Equality Act and got letters from both my doctors asking for a paper-based assessment.

“My MP has been really helpful and has written to them as well and it’s via him that I heard that the face-to-face assessment had been cancelled and that they are now considering a paper-based one. He’s had confirmation of this from both Independent Assessment Services (Atos) and the DWP.

February 2020

“Thank you for your reply last year and advice. I’ve had the decision through now so I thought I’d give you an update.

“I was successful in obtaining a paper-based assessment which was done in November. The Atos assessor (health professional) rang my GP, who thankfully is supportive, and asked her about how my condition affects me.

Once I knew the assessment had been done, I requested a copy of the report. The assessor had given me 21 points for care and 24 for mobility — but had recommended that my claim be reviewed in 3 years — with the justification that ME/Chronic Fatigue Syndrome is not incurable — which is incorrect.

“Having been ill for 27 years I then wrote to the DWP to challenge this before I got the decision letter setting out my benefit award.  I addressed the letter to the Decision Maker and sent it to the PIP office dealing with my claim. I learnt that, after receiving the assessment report there is a small window in which to write and point out inaccuracies in the report. I pointed to what my doctors had said about prognosis (what is likely to happen in future) and also sent the DWP information about the prognosis of ME/Chronic Fatigue Syndrome. I again referred to the ME Association meeting as frequency of reassessments had been discussed, and also sent a copy of the section on prognosis from the Report to the Chief Medical Officer on CFS/ME 2002  which states that recovery after five years is rare.

“I had the decision in January and have been given an award of enhanced care and mobility for an ongoing period with review in 10 years which is obviously good news and a huge relief — the decision makers went with all the points the assessor had awarded.

“I don’t know if you ever advise women with ME/CFS but I found using this meeting and quoting it at the DWP and ATOS very helpful for my claim: https://www.meassociation.org.uk/2019/06/meeting-with-minister-raised-important-concerns-about-welfare-benefits-for-people-with-me-26-june-2019/

“The DWP and Atos both seemed to be more careful with my claim once I’d started using it.

“Thank you again for your advice and for your brilliant website — I don’t think I would have had the confidence to ask for a paper-based assessment or had such a positive outcome without it.”

* Not her real name.



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6 thoughts on “I won 10 years’ PIP with M.E.”

  1. Thank you for sharing your story. I’ve had M.E. for 31 years and it’s an insult to say that it is curable. You’ve given me encouragement to pursue an exemption. But for your article, I wouldn’t have known about it.
    Waiting for ooomph to pursue this.

    • While not curable many people could do more to improve health one of them being from a nutritional aspect.

      Most people refuse this and will claim it wont make any difference which is false.

      In the case of benefits if a person with ME/CFS has been able to claim the likes of ESA for many years they should automatic qualify for PIP even if its bottom rates (I run a support group and hear from many different people about the problems not from just benefits but medical side not having proper support etc)

      Most of the me/cfs clinics try to force cbt/get and if you go against it you have no support being sent back to GP who can be useless as well.

      • Dear Nicolas MonBerg,
        Thanks very much for your kind comments, we’d be glad to discuss more in depth, the problems you mention, like ME/CFS being seen as psychological and treatable by so-called Cognitive Behaviour Therapy. Where is your support group based?
        Please do email us on win@winvisible.org
        Hope to be in touch again soon,

      • I agree about nutrition ? 2021, I went on the JJVirgin plan, eliminating corn, dairy, eggs, gluten, peanuts, soy and sugar. I lost a stone in two weeks, by food choice, as I cannot exercise.

        Still without stamina and bedbound, I changed my food plan to AIP, autoimmune protocol. I take nutritional supplements and found turmeric to be of immense help, painwise. Magnesium L-threonate enables me to sleep five hours instead of the ‘normal’ 90 minutes; restless legs syndrome is gone.

        Eliminating nightshade plants was key (potato). I missed the bit about seed-spices, ie: black pepper as my fingers are inflamed, itchy and red as I type. Purifying my body (fasting) and eating nutritious foods are my weapons against M.E., Raynaud’s Hashimoto’s and Fibromyalgia. Ongoing battle ??

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