Friday, 1 August 2014

Living Death Disease??

A scary title for this post!   So let me first reassure my family that I am a long way from being this ill!

However, I think it would be remiss of me to keep an ME blog, and to not explore the darkest corners of the illness. 

And when I talk about dark corners, that is really what I mean! The most severely affected cannot tolerate any light, noise or stimulation.  They are suspended for years in a twilight existence of extreme discomfort and isolation.

All images by Greg Crowhurst

They are also largely ignored by the medical profession; not least because their illness is so poorly understood, but also because it goes on for so long, and nothing seems to help. It is as if they have been swept into some dark corner labelled "Beyond Help"!!

So why does this happen?  Why is there not a bigger outcry?

Is this not every bit as scary as Cancer or AIDS?

Part of the problem might be the media-spun view of ME patients as just "de-conditioned" or "run-down".   Stories about ME tend to describe fantastic recoveries, and usually include a quote along the lines of: "But I was determined not to let this illness beat me!"

Do these writers really think that those left behind are LESS determined to recover?  

Here, Greg Crowhurst who has cared for his severely ill wife Linda, for many years explains:

How can anyone believe that mere "determination" is sufficient for recovery?

So what about some more determination to find medical answers for the severely ill?

Those of us with mild or moderate ME may appear almost "well" during our better moments, and this can lull the world into believing that ME is not at all serious. Those with Very Severe ME do not ever escape.

Very Severe ME should be labelled a "Living Death Disease".  

Alive, but unable to live!                                                                               
Too long ill to be given attention by acute services!
Too inexplicably ill for General Practice to manage!
Too mis-portrayed by the psychiatric lobby to illicit public concern!

Severe ME must be ignored no more!  


Please follow the links below, share this post widely, and join the campaigns online to spread the word about this darkest secret of ME!


This year there is a campaign to Stop the ME Cover Up on the Stonebird website.
Participants are invited to take and share photos of themselves totally or partially covered up, with a message promoting awareness of Severe ME.

Please do what you can to help raise awareness of Severe ME.


Further Information:

Stonebird: The Lived Experience of Severe ME
 25% ME Support Group website
 25% ME Support Group - Severe ME Day 2014


Black Dress Selfie Campaign also running for Severe ME Day 2014: 
Just ME: Black Dress Selfie


  1. Very Severe ME is about as scary as long term ill-health can get. Please share this message widely.

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  2. Linda , my wife, says this is the best article she has ever read on Severe ME. Absolutely brilliant ! It MUST be, as Sally says, spread widely. If only everyone would work to raise awareness like this !!!

    1. Thank you Greg and Linda. This means a lot. xx

    2. Very, very powerful blog Sally, this needs to be shared far and wide to help the most severe patients who remain invisible to the world. Sometimes I feel severe M.E. is ignored by the general public simply because it's too horrific to imagine a patient can be suffering to this extent and still be alive! Thank you.

  3. Scary maybe, but it is certainly very very real for many people. Thank you for sharing this with us Sally.

  4. Thank you for sharing this Sally. Too often people couple the idea of Myalgic Encephalomyelitis as "Yuppy Flu". As long as it doesn't touch their lives then it doesn't matter. What they don't realize is that the same way it took over our lives - it can take over theirs.

    1. Indeed Wendy - I had little idea about what ME was until I couldn't get well again....

  5. My daughter has had severe M E from the age of 13 she has had it for 12years it is the worst illness I have ever known and it is so hard to find a doctor who understand;s how to treat her.people with the illness need help so much

    1. This must be the hardest thing. ME is cruelest when it hits the young. I remain relieved that I got this and not my children. xx

  6. Excellent post Sally, You said it very well and the way it should be said.
    There is no other way to say it anymore, because its the only way to get the awareness out there.
    I will try to remember to put a link to this on my blog page.

    1. Thanks Anne. So much that needs to be said.

  7. Thank You yet again Sally, very powerful and most importantly, so accuratexo

  8. Thank you Sally. People need to understand but how to get them to do so if they don't even listen- or ask questions? I was finally diagnosed in 1988 and though I'm not bedridden my life is very restricted and can only go out when I'm up to it and then I need my wheelchair. Even my family don't understand. I think they're a bit ashamed to say I have M.E- just that "She doesn't keep well"

    1. It is so sad that ME is regarded in this way. A friend said she uses the term "muscle disease" sometimes to avoid explaining ME. She says people are more understanding of her using wheels this way.

    2. That's a good idea. Thank you Sally I might just try that. My heart goes out to those who are very severe. It's a living death and heartbreaking for their loved ones to cope with.

  9. Excellent blog Sally. You have explained the life of those with severe M.E. simply and clearly. It's truly a living death.

    1. Thank you Ros. I wish that this could make a difference in the bigger scheme of things. One day ....

  10. Super. But let's tell the whole truth. The lack of cures and treatments is largely due to propagandizing by the UK psychiatric lobby, including heavy influence on and entanglement with key figures at the US Centers for Disease Control and Prevention (CDC.) Perhaps even more disastrous, the fierce blackball on research money by key mandarins at America's National Institutes of Health (NIH), the world's largest funder of medical research, continues to block millions of people around the world from hope and meaningful healthcare.

    1. Indeed Deborah. The treatment of ME patients is a scandal, and the lack of funding for real research is outrageous.

    2. I totally agree with Deborah. The NIH is siphoning hundreds of millions of dollars in so many directions; however, badly-needed funding and grants for M.E. research are going by the wayside. AIDS had Elizabeth Taylor and many high-profile Hollywood performers. Where are our representatives in "high" places? Did you know that Cher is an M.E. sufferer? Where are her "friends" in well-known places?

  11. I am now in the severe part of ME CFS after over 15 years of fighting the system, CBT and medications that never worked, most times they made matters worse.
    I have no idea where this leave me now, apart from thinking every night I go to bed it will be a miracle if I wake in the morning, this is no way to live, the NHS here in the UK should be ashamed, I have said a few times that I wish I had the big C, at least I could end my life with a certain level of dignity.
    Yes there are some that will say "you have no idea what you are saying, no one in their right mind would want Cancer" but they will be wrong, they do not understand the daily struggle I go through just to live, I have no real enjoyment, I cannot drink, cannot smoke, have not been able to make love to my wife in months and I am only 46.
    When will the injustice stop and they take this terrible ailment seriously????????
    Sorry rant over

    1. No need to apologise, we need to get this message out there!

      I agree...cancer is very scary, and we all know people who have brushed with it and either survived or succumbed. It is horrible, but has public sympathy.

      Severe ME is horrible too, and apparently never-ending. None of us with ME want to remove sympathy from those with cancer.... but rather to have that sympathy extended to situations where folk are suffering in other equally appalling ways. Like with Severe ME!

      Thanks for your comment Mark. We all need some small miracles now. xx

  12. I hadn't heard about ME. Thank you for sharing. Must be so hard and now I know why this title grabbed the most views for you.
    Stopping by from the Blog Her Writing Lab.

    1. Ah thank you Parul for your comment. Thankfully I am not so ill as the most severe. Part of our dilemma is the stigmatising label of "chronic fatigue syndrome" that implies it is just a form of tiredness. Hopefully new research will lead to real treatments for us all soon. xx

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