Enough is enough – what are we going to do to change this awful situation? | 29 October 2015

Alan Cumming copy

Ten years is a long time. In the 10 years since 30 October 2005, I’ve gained a new life, a new family, and a new career. I didn’t plan it – it all happened after my husband, Alan, took his own life when he could no longer cope with his ME.

My life has changed out of all recognition. I wish that I could say the same for people with ME. But nothing has changed since Alan’s death.

It’s not for want of trying on the part of the ME charities, but there’s just so much to do. So politicians continue to pay lip service to our needs; the medical profession, harder pressed than ever, struggles to cope with us; the press continues to print every bit of codswallop without bothering to check the facts; research projects inch our understanding forward at a snail’s pace; and in the meantime, people ‘catching’ ME continue to struggle with studies or careers, and family relations and finances are stretched to breaking point.

Ten years ago, The ME Alliance produced a report “ME Diagnosis – Delay Harms Health”. It stressed the need for doctors to have made a final diagnosis within 6 months, but to start managing symptoms sooner – as soon as a provisional diagnosis is reached.

Alan, my husband, (pictured) caught “‘flu” in late 2004, but then failed to recover. His doctors ran all the tests, but refused to call his illness ‘ME’. They believed (mistakenly) that they shouldn’t diagnose ME for at least six months. But a lot can happen in six months – employers start getting tetchy, finances peter out, and family relationships are stretched to breaking point. By the time they started ‘treating’ his illness, Alan was untreatable. You know what happened to him.

No family should have to face what we went through. But 10 years further on, so little has changed. The message isn’t getting through. It is still taking far too long for most people to be diagnosed or treated in any way for ME. Even though we know that the sooner ME is ‘caught’ the better – and that the sooner symptoms are treated (even before a firm diagnosis is made), the greater chance someone has of recovery.

So, undaunted, we’re trying again. And we’ll keep on trying until we succeed. But we need more help. A lot more.

Here at ME Association, we’re working our socks off but we’re only a handful of people. But, between them, the ME charities have thousands of members, and followers. If every one of those did a little bit to raise awareness, we could start to make real progress here.

Facebook and twitter lit up yesterday in righteous indignation at the twaddle printed in certain newspapers. That’s a start. That was great. Thank you.

But please don’t let it stop there. Everyone can do something:

Tell others about ME – get your families and friends involved too. Write to your politicians, sign the petitions, make a noise in the press…..
We’ve GOT to work harder to make doctors understand this horrid illness. You can help by supporting our Big Give Christmas Challenge – “Early and Accurate Diagnosis of ME” by donating anything you can spare on 4th and 5th of December.
Start planning to Go Blue for ME Awareness Week next May – even if you put a filter on an outside light or wear a blue wig for the day, you’ll be doing your bit.
Please help us to make a difference. Help us to give more people the chance, and hope, of a recovery from ME.

Thank you for taking the time to read my story. And thank you for your support.

Helen Hyland
Fundraising Manager, ME Association



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