He looks a picture of good health, taking regular walks, swimming and plodding along. Given the fact that he 'paces' himself I am to assume he is, at least to some extent, still afflicted by M.E.; but is this the reality for those living with this ''severely disabling disease'' ? Is this what we want the world to see ? What we want the world to hear ?
Why mention the ''some on the militant fringes'' ? It isn't ''some'', it's hardly any of the seventeen million that have this disease. Why draw attention to something that the Wesselys have grossly distorted ? Why ?
Why mention Dr Max Pemberton ? What purpose does that serve ? Why ?
Why mention the XMRV debate ? ( unless to say he knew all along ) We have moved on, why not mention Lipkin, one of the worlds most renowned scientists who has stated that this illness is of biological origin ?
Why is the illness a ''mystery'' ( suggestive of we 'don't have a clue' ) when we have thousands of papers showing biological abnormalities. Not conclusive, of course, but a ''mystery' ??????
We don't get many chances to put our best foot foward, but when we do, we need those who want to help, to weigh and measure every word. How much of that article is really new; how much of that article really helps us ?
The article talks about ''yuppie flu'' and for a moment I thought this article really was from the 80's
I am sure this has afforded some semblance of encouragement to others, and I do not wish to take that away from you. I genuinely mean that, but I cannot help but think that this was yet another missed opportunity.
Kind regards, Mark
Forgive me i'm carashing, I need a break. I am grateful for Dr Shepherd for at least trying, but I am sorry we deserve better.
I understand your concerns, Mark, but it helps to keep in mind the context in which it was written.
Remember that this is a Telegraph story, and was not written by Charles Shepherd.
If we want to get the media on board, then we have to work
with the media, and to deal with the subject on their terms. If we just approach a newspaper, and say "I want you to say this, this and this, about ME", then they will just ignore us.
Newspapers need a 'story', and they like to include topical subjects, and controversy.
At the moment, the 'controversy' is the 'militant patients', and the 'XMRV' story.
It's no mean feat to get a story like this published. And I think it's the best we can hope for from the Telegraph at the moment. Hopefully there will be more to come. There was also a sympathetic story in the Independent this week:
http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html
In terms of Charles Shepherd's health, not everyone with ME is bedridden. There's a wide range of disability. The more that articles like this are published, the more that the public will begin to understand the nature of ME, and the different levels of disability involved. I think it's helpful if the public understand that some of us might look well, and lead apparently near-normal lives, but that doesn't mean that we are fully functioning. Obviously, more stories are also needed about severely affected patients.
Re the 'militant' issue, I don't find that particular phrase helpful either, but this is the Telegraph. There's no way that they were going to leave that issue out of the story. It does seem clear that there is a small number of people who do upset various researchers, scientists and doctors etc. And some of these people are considered 'abusive' or 'harassing' to those at the receiving end. I'm not surprised about this, and I fully believe that it's a reality. Whether a small number of people are actually 'abusive' is a subjective issue, and only those at the receiving end can really make that judgement. I don't think it's something that we can argue with really.
The 'militant' issue is obviously being used by some people for their own purposes, to paint us as an unstable patient group.
We can't do anything about that situation, and I think it's unavoidable, and so I don't think it's worth paying too much attention to it.
The rest of us can continue to engage with the issues reasonably, if we think that's the right approach.
Edit: Oh, I've just seen your other post, Mark...
Please don't see my post as being aimed at you personally, Mark...
I was just making general comments in response to your concerns.
I do understand why you are disappointed with the article, but it is the Telegraph, and that's the best we can expect from them at the moment...
Hopefully they will publish more sympathetic articles in the future.
Charles Shepherd spent an afternoon at the Telegraph offices, with the health editor, and that can only have done us all a huge favour...
It means that they have now met someone with ME, who is very reasonable, in a position of authority, and not suffering from a psychiatric illness. He also came armed with research evidence etc. etc.
Maybe they won't dismiss us or insult us so readily in the future, now that they have a 'face' to represent the illness.
Hello Fire et al, thanks. I feel really bad criticising anyone that has had the courage to speak out on our behalf.
I am not going to go off on one again ( ok maybe I will ) but why oh why mention ''Shepherd himself became the target of hate mail'' ? Who does that serve ? PR for us ? Or PR for the DT ?
Thanks for the Facebook comments Fire, much appreciated. I wonder how many readers will go from that article to Facebook ?
Yes of course calling NICE not fit for purpose is very welcome, i am quite wrong not to mention the positive aspects of this interview, but I can't help feeling they are overshadowed by so much that I wish had not been said ( regular walks - court of public opinion : ''look that's what Mark should do'', and ''why doesn't he go swimming also'')
Goodness knows what my GP made of that, or what the DWP might make of it, or the Disability tribunals, much of which is subjective.
There was a plethora of other areas that could have articulated the dreadful way in which we have, and continue to be, regarded by the medical profession even putting aside our suffering.
Ok that's enough from me ( this time I mean it ! )