Discussion in 'General ME/CFS News' started by Dolphin, Nov 7, 2017.
The author plugged the book on a Facebook group I'm on like this.
Great reviews on Amazon. Just ordered it.
Looks good. Despite the awful model head-clasp photo on the front I might have a look at it.
Thanks, looks good, I've just ordered it.
I don't get it.
I haven't read it obviously, but if as described it portrays the life of someone with ME, why does that make it a desireable thing to purchase for pwME - we already know what life with ME is like.
Cause: who else will buy it
I'm buying it in the hope it might be something I can pass on to or recommend to doctors or politicians. They may be more inclined to believe a doctor!
Same. I have some friends in the medical profession. I'd like to read how she portrays it and pass it along if I think it represents our situation well.
@TiredSam I know what you mean about the cover art... I don't know if it's just me but I've noticed a lot of books or news articles on CFS/ME are "headlined" by an image of someone doing a face palm/head clasp of some description. I can't explain why but I just find something tacky/obnoxious about it, ha ha. I know it's not the most "happiest" of topics but I don't think those images are really creating the "shock-factor-you-have-to-take-us-seriously, look at us!!" image they're hoping for. It just looks tacky to me but I can't explain why! lol
A 'tired' appearance from a day at the office does not represent M.E.
In case anyone wants to ask the author of this book any questions: she has a FB group and is pretty responsive.
Can't remember where I read this, but she is trying to organize an Unrest screening during a doctors training day (an audience of approximately 100 GPs). She also encourages people to send their docs the book (as someone on this thread said: some docs will be more inclined to listen if the message comes from a fellow doc), and is looking into creating an e-version of the book so it's easier and cheaper to send.
I haven't read the book (can't read more than two paragraphs due to cognitive difficulties), but from what I've seen from her she seems to mean well. I'd be interested to hear from anyone who has read the book.
Right? Another book about M.E. and no audio version. I'm going to have my husband read it to me. I miss reading
I may purchase for our paediatrician as a going away present - at 16 you transition to adult services here. Padiatrician has not had much of a clue.
I have to admit this Dr with ME seems (or so it feels) like the tip of the iceberg in that all of a sudden PwME are everywhere sharing their story.
Where were they last year -- 5 years ago etc?
Is there an epidemic occurring?
Surviving, most likely.
As long as they are not being hypocrites or arse holes about it, then I don't particularlyt blame individual docs with ME keeping their head down. They don't exactly have much power to stop the madness, and they know full well what the attitude of their colleagues is likely to be, and that a particularly nasty bit of it is reserved for those who 'let the side down'.
Doctors are human too. Well, most of them.
Hiding from the health service like the rest of us?
Not read the book had a look at the Facebook page it seems to be picking up people who are a mix of people who hang out on Facebook including some more long standing patients but some pretty new ones as well. Some good advice from the Doc and more experienced patients to the new folks and most definitely flagging issues with GET/CBT. it smacks a little bit of a fan club not much signposting people to other information and organisations
@NelliePledge, I agree. I joined the Facebook group, but pretty rapidly gave up on it. This is not a criticism, it's a reflection of how Facebook works. I have the same problem with the MEA Facebook page which I was fairly active in for a while before I found forums.
Facebook discussions happen in short time spans and then are effectively gone as new discussions start - the page is one long continuous list of discussions in date order, so anything from a few days ago is forgotten.
This means that the same discussions happen over and over with no reference to previous discussion of the same topic. I found that totally unsatisfying. It's fine for sharing ephemeral bits of news, but not as a place to learn about how to treat your illness, or carry on meaningful conversations.
Forums are much more helpful and satisfying I think. I just wish the different ME organisations would acknowledge that, and tell their members about the forums available.
@Trish yes Facebook does my head in but there are some who seem hooked on it. It definitely is just about whatever the last couple of posts were about unless the page owner keeps something pinned everything becomes chip paper. It is quite good for the questions like I have this symptom or I've been told this by my Dr where people need responses reasonably quickly. Not good for advocacy where info needs to be easily accessible over a long period of time. It does seem to be a good step for people into online world of ME tho.
And one good benefit of being on MEA Facebook and it being an open group is that anyone who follows me is going to be getting traffic about ME just from me liking and commenting and sharing MEA stuff without me having to make a lot of effort to explain stuff in emails. They might actually read the odd thing and learn something.......drip drip drip
I decided to order the book by the way it is only £5 and I thought maybe if it is any good I can give it to my GP after I've read it and ask her to share it round the surgery which was an idea from this thread.
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