Severe ME day: August 8 2019

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Introducing Severe M.E. Week from the 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.
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www.meassociation.org.uk/2019/08/introducing-severe-m-e-week-from-the-me-association-05-august-2019
 
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Hopefully we can get #SevereMEday to trend on Twitter like we did a few years ago. Best not to use it in tweets in advance as supposedly the bigger the contrast between background usage levels and current usage levels is a factor in what trends rather than solely raw numbers.
 
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MEA Press Release: Severe ME Day - M.E. sufferers hit out at "humiliating" DWP benefit assessments

For Severe ME Awareness Week, charity the ME Association, lays bare the struggle faced by members to obtain the basic Personal Independence Payment, a benefit for people who may need help with daily activities or getting around because of a long-term illness or disability.

The way in which M.E. symptoms fluctuate throughout the day and from day-to-day means that snapshot assessments are often inaccurate.

For example, while a person may be able to walk 20 metres, and prepare a meal, they may not be able to do these tasks in close succession or even on the same day.

Additionally, the hallmark symptom of post-exertional malaise means that the activities at the assessment could trigger a worsening of symptoms that is not seen until days later.

The ME Association is concerned that assessors have little understanding of M.E., and patients are being put through an ordeal of having to justify their genuine illness.
 
Very good program, thank you @Gary Burgess.

For those unable to listen, the program includes two interviews. The first, with a woman called Jo who has severe ME about how it affects her. The bits I particularly remember are her emphasis on the need to rest, and not push yourself, and she has written a blog about her life with ME.

And secondly, the ME Association benefits adviser talked about her role, and the difficulties for people with ME in getting benefits and the harm the lengthy process does to the claimant's health. For more information, contact the MEA and get their guides to fill in the forms.

Things that stuck in my mind - when filling in the form, don't say you can't do something if you occasionally can - it can come back to bite you if they see you doing that thing during the assessment. Always explain whether you can do it reliably, repeatedly, and what the after effects are of doing it.

And secondly, when you get your doctor to write a report, the key things to include are not the diagnosis, but how it affects your daily life and what you can and can't do.
 
Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst | 08 August 2019
Over the last 26 years I have learned a great deal. I have, for example, learned, at tremendous cost, that it is not just the psychiatric misinterpretation of M.E. that endangers people.
Rather, it is those in the medical profession, whose crass ignorance and refusal to look at underlying causation or to really listen to the patient and their physical experience, that, without doubt, pose an equally pernicious threat to people with M.E.
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https://www.meassociation.org.uk/20...d-integrity-by-greg-crowhurst-08-august-2019/
 
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Tom Kindlon said:
She was already bedbound before the need for the dental work. When you are that ill, it is hard not to get worse.
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Yes but cognitively it sounds like she had a huge worsening as a result of the dental work?

I am severe.

Is dental work usually that dangerous for PWME? Is there anything that can be done to make it safer? I know that some PWME react badly to certain dental anaesthetics so a different one has to be used...
 
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