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Rethinking ME

Whilst there is a long way to go in terms of disability equality, there are areas where things are starting to improve.

Disabled people are often talked about as a group of people or a ‘community’ – but every disabled person is so different, and the list of possible barriers they face is endless. Equal Lives are a ‘pan disability’ organisation – this means we work with anyone who is experiencing disabling barriers, and often we don’t even need know what that disability is to be able to support you. We just need to know if you identify for yourself that you’re disabled. For some people that is not such an easy question, and many of us attach a lot of feelings to words ‘disability’ or ‘disabled’.

At Equal Lives we work to the social model of disability – and this helps lots of people process their feelings and find language that helps them communicate those feelings. I think this internal battle is particularly difficult if you have what might be known as an ‘invisible illness’.

There are many conditions out there that you can’t necessarily see by looking at a person. The diagnosis process for illnesses like this can be long and exhausting. Even more so, if you get a diagnosis and learn that there is little known about what you have.

Take ME for example (Myalgic Encephalomyelitis), sometimes known as Chronic Fatigue Syndrome. Even though ME affects around 17 million people worldwide, there has been little known in terms of effective treatments and dedicated research.

That’s why the ‘Rethinking ME’ report the government has put together recently is so important. The report has been formed by the All Party Parliamentary Group (APPG) and was launched at a reception in the House of Commons last month. The report is substantial and could positively affect the lives of so many with ME, and people who may come to be diagnosed with ME in the future.

One of our team who has ME says ‘I’ve read the report and I can certainly attest to the fact that it contains some valuable findings and speaks a lot of truth with regards to out-dated attitudes towards the illness within the medical profession. Moreover, it shines a much-needed light on the plight of people with ME who continue to face scepticism and a lack of understanding over the illness.’

In this Rethinking ME report the APPG draws attention to health assessments being unfit for people with ME due to the fluctuating symptoms. This is something many people struggle with when being assessed, as things can change daily.

Often, potential abuse of the systems has been prioritised over accessibility. For example, with health assessments and benefit applications. And recently we’ve seen higher numbers of rejections for blue badge applications, even for people who have had a blue badge before and their condition hasn’t changed.

We’re so glad to see good things coming out of the APPG that will help disabled people and their families. The APPG has actually had a good focus on Disability since its inception. In 2019 they reported on the 5 week wait for Universal Credit, recommending:

· People who are self-employed should be able to request 3-monthly assessment periods for earnings and costs

· The rigidity of monthly assessment periods needs to be urgently reviewed

· All claimants should have the option of direct payments to their landlord from the start of the claim

The pandemic has definitely brought into the spotlight just how many disabled people there are in the UK, and how inaccessible much of day-to-day life can be.

Accessing life changing medical support is an enormous barrier that so many disabled people face and we hope this is a step in the right direction for those with ME, and conditions like it.

To read the article and the report, click here

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