Discussion in 'General ME/CFS News' started by Bob, Jul 16, 2015.
TV News from the UK. Warning: It's not nice to watch.
Very tragic. Also tragic that the family doesn't know how completely useless and even abusive the NHS is for ME - that will be another punch in the gut, when they get to that stage.
I thought the same this morning - they don't know how lucky they are yet.
"might never recover" - they just know nothing about the research going on in Norway, over in the U.K?. Saddening.
Is it just the new awareness in the media? I'm starting to feel like ME seems to be more prevalent than I thought based on so many new stories.
There does seem to be quite a bit of media activity at the moment.
But I'm always surprised that almost everyone I meet (off-line) knows somebody else with ME. I rarely have to explain what it is, from scratch, because people have usually come across it before. So I don't think it's a rare disease.
There was a fairly good NHS Consultant (i was told by a local ME group leader) in Manchester but that was before the fatigue centres opened. Patients can still get to see him but they would need to talk to the local ME group and find out where he is etc.
I don't know who children would get referred to though anyway
Maybe Creepy Crawley will see the article, and rush to "cure" the boy. Then she can re-diagnose him with a psychological problem and blame the parents when he remains ill.
Anyone know who the female expert (sounds like probably not a doctor but psychologist/similar) is in the video? Just curious.
I wondered that myself. (I don't know who she is.)
This came through on Twitter:
Photo of Sue Pemberton for her Twitter profile looks a bit similar.
Well spotted Dolpin!
I think she takes quite a broad view of things, I seem to remember she got sacked by the NHS for not being psychiatric enough. I don't know that much about her though.
The first thing I thought was only a year? hmmm... I'm still ten years out and don't really have any treatment plan yet from any doctor, only what I've sorted out for myself.
I'd like to know who the Manchester-based NHS specialist is the boy has been referred to. I waited six months for an appointment to see an NHS "CFS specialist" in Manchester, and was less than impressed by the reception I got. One thing I particularly remember is that when I was asked how long it had taken for the symptoms of the virus that marked the start of my illness to subside and I replied that actually they hadn't yet subsided I was literally laughed at. Bear in mind I wasn't saying that I still had a virus, just that the symptoms that came on with the virus were largely still with me. Apparently this was a laughable claim.
I don't know for sure who the boy is going to see, of course, but I have a feeling that he's going to grow up very quickly in the next year or two as he learns some harsh truths about state healthcare and the world in general - truths that his more fortunate peers will probably remain blissfully unaware of for the whole of their lives.
First your childhood gets destroyed by this illness, then the "experts" who are supposed to care for you show up and violate you all over again.
I've found the comments in this thread more wretched, stark and depressing than the video. That's not a reflection of the people making the comments, but on the system that you're all commenting on, which utterly fails to support ME/CFS patients.
I was expecting a lot of "you think that's bad... wait til you get the 'treatment'."
So terrible it's kind of funny? I try to laugh! (Haven't watched the video, upset kid would make it less hilarious).
You know a boy that age is in a very bad place when he's not even bothering to try to hide his tears from a camera and strangers. And he has a walker and crutches, but his mom still has to hold him upright while he moves around. He had a wheelchair for outside use, but was trying to help push the wheels as his mother pushed him.
My general impression is that he and his family are dutifully trying to fight through it and stay as active as he can, which is pretty much guaranteed to keep him sick and make him sicker. Multiple tragedies. But yes, definitely a lot of black humor involved, since they think that getting access to a fatigue clinic will solve some of their problems, instead of just adding to them.
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