Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

[Ecoclimber]

This is a brilliant, profound and moving piece by former journalist Lucy Mayhew. It made me cry in places but it's uplifting too. It's been a great year for pieces about living with ME (not to mention brilliant pieces about this illness more generally - thanks, @charles shepherd - and research - thanks David Tuller and more) and perhaps this is the finest.

You did well! Thank You.
@Luelma

I concur with Simon, a brillant piece. Good Grief, IBS and gastrointestinal issues are part of the CC& ICC criteria...look it up.

I love the photos. It shows the often repeated phrase, Well, you look fine, why can't you...? I believe it ties in well and drive home Point 4 from your article...Avoid belittling commentary: ‘I wish you’d try to overcome this depression; get some fresh air; ignore the pain. You certainly look well.'...

How many patients have been told by others, you don't look sick?

I notice that the Telegraph has been putting out some rather positive articles lately so your comments are helping!

You can nitpick but where are the ME/CFS patients on social media supporting Prof. Coyne and the PACE Trial. Don't leave him out there alone against the entire UK medical establishment. There is always the same small handful of people that are on twitter or making comments on his blog supporting Dr. Coyne compared to the number of members on PR. Where are the rest of you? Many of these advocates are getting burned out. Some had to take a break because it was impacting their health. This is an historic moment for those in the UK to take down the PACE Trial where is everyone?

His message needs to get out to the rest of social media and to other groups.(Lyme, Fibro, MS, Cancer Fatigue, PDST, GWI, other scientific and medical groups to name just a few) otherwise we are just preaching to the choir. So please if you can post on here, please make a post on social media on twitter or make a blog comment. Remember, the pen is mightier than the sword. The battle with UK medical establishment is going to be extremely difficult to overcome. There is something in the PACE Trial, that the authors do not want to reveal.

I don't want to sound preachy, but I had to take a break after suffering a major crash for this very reason. This is my third campaign (xmrv, IOM, and now PACE) and my health has to come first.

 

[Aurator]

Apologies for the understandable offence of both the headline which I begged to have changed the moment I saw it and for the photographs.

You've no need to apologize, Lucy; you said nothing about ME/CFS that wasn't perfectly true, and you told it in a moving way.

Please accept my own apologies, on the other hand, for my hardly very sensitive comments on what I saw as the possible impact of the article on people not familiar with ME/CFS.

It was the photos, chiefly, that prompted my reservations. The fact that the first photo's caption indicates that it was taken before your illness and the other photos don't state when they were taken made me assume that the second two were meant to depict you in your present condition. It's not impossible of course to smile when you have ME/CFS or to sit on a bench outdoors, but when I showed the article to two people who know a little about ME/CFS they found it difficult to square the image of you apparently resting in the middle of a run with your undoubtedly sincere remark that today you are sicker than ever. I know for sure that you would never have chosen to create that kind of confusion if you had been in charge of the editing.

 

[Luelma]

Tjh

You've no need to apologize, Lucy; you said nothing about ME/CFS that wasn't perfectly true, and you told it in a moving way.

Please accept my own apologies, on the other hand, for my hardly very sensitive comments on what I saw as the possible impact of the article on people not familiar with ME/CFS.

It was the photos, chiefly, that prompted my reservations. The fact that the first photo's caption indicates that it was taken before your illness and the other photos don't state when they were taken made me assume that the second two were meant to depict you in your present condition. It's not impossible of course to smile when you have ME/CFS or to sit on a bench outdoors, but when I showed the article to two people who know a little about ME/CFS they found it difficult to square the image of you apparently resting in the middle of a run with your undoubtedly sincere remark that today you are sicker than ever. I know for sure that you would never have chosen to create that kind of confusion if you had been in charge of the editing.

Thank you Aurator.
Given the extent of disbelief and misunderstanding around this illness; it is certainly important to unambiguously state whether accompanying pictures are from a time before a person lost their health, or are current, especially if, like me, they are now bedridden.

I'd hoped the words of the article spelling out that I am bed-bound, often in suicide-inducing pain - not a term I use lightly - and can often barely sit up in bed (in fact now, too often, that extends to barely being able to lift my head off the pillow as the majority of this was written seven months ago) would have made plain that jogging would be physically impossible and clearly a part of my former life. But evidently not and that is indeed a shame.

Comments I have encountered have largely been very positive even from people who aren't sufferers so fingers crossed reactions like your friend's are the exception not the rule!
Edits to articles which are often deeply personal to a freelance writer, can be heartbreaking to read as few understand the big changes that are often made once an article has been filed. Fortunately the actual article remained unscathed and that is rare. In the past I have had articles where barely a line is recognisably my own and the re-worked sentences have made me shudder they are so alien to my manner of expression. All in all hopefully there was enough in the actual content of this piece to make plain that this a life that no sentient being could ever choose.