Discussion in 'General ME/CFS News' started by Robert 1973, Feb 26, 2018.
@Jonathan Edwards Would you consider contacting Gary to offer to speak on the show?
Could be good, could be bad. Do we know how clued up he is with the complexities of the situation surrounding ME?
I've reached out to him, would be great if we can get him to join up here.
His TV slot wasn't bad. I did make me wonder if he is aware how severe the condition can be though? It would certainly be good to engage with him.
He could do a great deal of good and he could, quite unintentionally, do a great deal of harm if he doesn't realize just how bad this can get.
He's seen Unrest, so he does know how bad it can get.
Does he though?
He may feel that his level of functioning is more typical.
It amazes me that some of the people I know at the milder end (& this is not a them vs us statement -we're all sick and we all suffer), can be a little blind to the level of disability other than their own. They know theoretically it can be bad, but seem to assume most people are like them.
Typically, they will ask about symptoms etc.. Every symptom I have, they have too. When I describe how disabling I find it, yep, they get it that bad too. And yet their symptoms don't stop them going out several times a week, alone. Taking holidays and jojning craft classes etc.
I don't think they're lying about their symptoms or the severity. It's just they don't see it. It's a bit like those pain charts that rate out of 1 -10. If all you've ever done is given yourself a paper cut you might rate the same level of pain very differently to someone who has experienced natural childbirth without pain relief.
I wonder whether it's more a case of not wanting to confront the possibility that it could affect them that badly.
I spent the first decade or so mildly affected and able (just) to hold down a part time job and bring up kids, with lots of PEM relapses and sick leave. I used to feel guilty telling people I had ME, as they saw me apparently functioning normally at work, successfully hiding just how ghastly I felt most of the time. I was concerned that colleagues would see me able to work and assume that everyone with ME is mild and able to function fairly normally (they didn't see me crashed out at home, and having no social life).
I knew then how much worse it could get, and indeed, in my case it has, so I'm house and mostly bed bound. I think when it was mild, not thinking about how bad it could be was a coping strategy. I was in denial.
I remember going once to the local ME group and the rest of the people there were talking about how they had to give up work and were struggling with daily life. I didn't go back. I didn't want to know. It would have made coping with my life much more difficult if I'd had to confront the likelihood of having to give up work, which I eventually did have to do.
I didn't disbelieve, I was not unsympathetic, but my coping was based on denial, not of others' suffering, but that it could happen to me too. I suspect quite a lot of other milder sufferers are like that - the possibly of getting much sicker is too hard to deal with. And maybe they are too busy trying to keep their heads above water going to work, or trying to have some semblance of normal life, to have any time or energy left to join in campaigns or support groups.
Edit - sorry, that was a bit of a ramble, not really relevant to this thread.
@Robert 1973 or @Andy, could this be added to the calendar, please?
You may well be right @Trish. I don't think it's meant nastily or that the person is lying. I don't know why it happens.
I can look at certain cases of very severely ill people and clearly see that I am not as badly affected, may not be in as much pain. At the same time I can see that a more mildly affected patient doesn't seem to suffer all the same symptoms or at !east not to the same extent but they are still very unwell and debilitated.
I think this is kinda on-topic, in that the !ess severely ill are the ones most likely to be in the position to make the most noise in terms of advocacy. If we can engage with them, they may learn more and maybe we can support their efforts.
I knew a lot about ME before I joined an ME forum and met many of you guys. Then I learned how little I actually knew....
Eta - spelling
"We often get asked for a good explainer of what ME is. The best we’ve found is this from Action For ME which is pretty comprehensive." (it's not a bad description but...).
Still he is very new to this. But unfortunately he has more 'power' to reach other people than most of us.
This could be a good or a dangerous thing.
Hmmm again. Its not "life" getting on top of me, its ME illness rendering me too sick and disabled to live life.
I find it generally unhelpful, and misleading, when well meaning people conflate ME with burnout, and use words such as "frazzled".
I think it's potentially good. For example he says on page https://zonked.club/first-time-visitor/
"if there’s anything that you feel is missing from this site, just let us know!"
It's inevitable that we'll all find bits we disagree with as there's still so much uncertainty and we all disagree with each other on lots of things. That's one reason why it's so hard for us to move things forward through advocacy efforts. Fingers crossed it will go well.
Page for the show on Weds.
The guy is doing a great job of spreading the word about ME/CFS.
It may be that @Jonathan Edwards is at the Forward ME meeting, or still skiing!
Somebody just texted me this link:
To Gary's piece. He's definitely getting attention!
Looking at that, I'd assume that AfME are his go-to source for information at the moment.
"Why do we know so little about M.E.?"
I very much doubt (seeing that AfME seem to be key participants in this programme) that he will get the real answer to that question.
Separate names with a comma.