Introducing Severe M.E. Week from the ME Association | 05 August 2019


Russell Fleming, Content Manager, ME Association.

Today marks the beginning of Severe M.E. Week, running from Monday 5th to Sunday 11th August, with Severe M.E. Day falling on Thursday 8th August.

We think people with Severe M.E. deserve to have a dedicated week that brings attention to the reality of their level of disability and their particular concerns. By bringing these issues to the awareness of the public we hope it will build on ME Awareness Week and continue helping to end the ignorance.

We want to focus on the issues faced by people severely and very-severely affected, and we’ll also be hearing from family members who provide care and support – often with little or no help from the medical profession and with unwarranted and often destructive attention from the education authorities.

This year we are also emphasising welfare benefits because applying for benefits with M.E. remains a key concern.

We will be highlighting the problems that can arise especially when a person is forced to apply when at their worst, as well as discussing the ways that people with M.E. depend on benefits to help make their lives a little more comfortable.

For those with M.E. who aren’t currently experiencing such extreme levels of disability, you are very likely to remember those times when M.E. was at its worst and we hope you will still take part in the discussion.

This week’s focus need not exclude anyone. And if anything, those who are severely and very severely affected, need your help to let the world know the reality of life with M.E.

What’s happening?

The following provides a rough idea of what we have planned. We hope you will be encouraged to engage with us during the week and share our articles, blogs, graphics and discussions far and wide!

  • Following an earlier call for case studies, we’ll be sharing your own stories and experiences with Severe M.E. in the mainstream news-media and on our website.
  • We will be featuring guest blogs on our website from people with Severe M.E. and hearing from their loved ones who are often their primary care providers. If you would like to discuss submitting a blog about Severe M.E. (or on any other topic) then do please get in touch.
  • Gary Burgess will be releasing a special episode of The ME Show podcast on Severe ME Day. It will shine a light on the issues people face when trying to claim disability benefits and will feature interviews with Severe M.E. sufferer, Jo Moss, and MEA Welfare Rights Adviser, Ann Innes. Don’t forget, you can catch up with both seasons of The ME Show on our website, via iTunes and other podcast platforms.
  • We will be providing new graphics on social media for you to share, drawing on the more recent contributions you have made to our Real M.E. campaign. It’s not too late to send us your photos and short contextual explanations. Demonstrating that M.E. affects real people by sharing photos and stories is having a positive effect and we want to keep this campaign running for the foreseeable future.
  • We’ll be asking questions and generating relevant discussion on social media, principally on our Facebook page, but also on Twitter and Instagram. If you have any questions you’d like us to ask then please send a message via any of these platforms and if we can’t answer it ourselves, then we can ask the community without you needing to identify yourself.
  • We will be sharing information and resources on Severe M.E. that can be helpful for patients and carers who want to learn more about the specific challenges such disability can bring. You can also read our booklet, Severe ME – Helping you cope, which is available in the website shop to download.
  • And, while not specifically about Severe M.E., Dr Charles Shepherd will be joining the disability charity Scope, to lead an online discussion on Tuesday to help raise awareness most specifically about what is and is not M.E. You can join in and ask questions or follow the conversation by visiting the Scope website. Dr Shepherd will be available from 10.30-11.30am but you can leave questions at any time.
In this 12-page leaflet we discuss the symptoms, management options, how to explain Severe M.E. to others, and we hear from sufferer, Hannah Radenkova.

Get Involved

It’s no secret that M.E. can fluctuate over the course of the illness in terms of symptoms and severity.

It can also stabilise at certain levels, demonstrate signs of improvement or for some it can progressively get worse.

It may be that you’re living with Severe M.E. at the moment or caring for someone with Severe or Very Severe M.E. or that you’ve experienced periods of being severely affected in the past, and only now feel that you have a voice.

It may be that you’d simply like to help raise awareness of arguably the most neglected section of our community: one that still has a number of important unmet needs that directly and negatively impact on patients’ quality of life.

Whatever your reasons to get involved this week we will be incredibly grateful for your support and really want to hear what you have to say. So, let’s talk Severe M.E. and help end the ignorance!

When you need to talk

The reality of Severe and Very Severe M.E. and the problems encountered by the disability benefits system are important topics that need to be talked about. But we do appreciate that some people may find what we discuss this week in particular quite distressing.

If you find yourself struggling with any of the issues we raise or simply would like to speak to someone who can help, then please consider contacting:

Health should always comes first, so please do take care of yourself.

Thanks for reading, and here’s to a successful and engaging week of campaigning!

The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.

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