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

October 29, 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


3 thoughts on “Enough is enough – what are we going to do to change this awful situation? | 29 October 2015”

  1. Dear Helen. I’m sorry to hear your story and it saddens me to know people become so desperate. I have indeed had such feelings myself, but I am a fighter and just this morning I have told my daughter not to criticise me for trying to raise awareness. I have 2 daughters with ME and cannot even persuade them to help (I do understand their plight though). I have had ME myself for over 10 years.

    I have personally taken Doctors to task if they do not take ME seriously and can say that my consultants are excellent now.My GP said he is interested and asked for more information, which I gave him along with a letter. I’ve found that a personal letter to inform doctors of the problems I have, works very well in most cases and they appreciate being thanked along with asking for their expertise in their field.

    Yesterday I forwarded the PACE details and request for retraction of the statement, that ME can be overcome by exercise and a positive attitude, to the Patients Association, to see if they will help sufferers in any way. I will keep you informed if they have anything positive to offer.

    Thank you for all your work and sharing your story.

  2. I’m so sorry for your loss but I for one am immensely grateful to you for writing this article especially after all the bad press this week regarding the Pace trials.
    I agree totally that not much has changed in the last 10 years which is very disheartening.I say this from personal experience of living with Severe M.E. since 1993.
    I so hope during the next decade that we move forward to find a definitive treatment for M.E. and quicker diagnosis for sufferers as its long overdue.

  3. hi there helen
    thanks for laying this painful personal tragedy out
    and thanks for being so brutally honest about the very difficult, challenging and in many respects scary situation and prospects of patients with this horrific illness.

    i disagree with the ladies comments below who says that doctors are becoming more receptive
    after being ill for 22 years, i can say confidently that the opposite is happening
    jeremy bearman
    cape town

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