New book: "M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome"

[Diwi9]

Just finished the book. It's good, it's advocacy. It's simply written and the text is spaced...plus it's very short. I will be passing this along to a friend in the medical profession. It does a good job of explaining our experience, she specifically makes the point that this is a biological disease. Her M.D. gives her similar credibility that Jen Brea benefits from because of Ivy League affiliations; hopefully this means the message will be received by readers.

 

[Trish]

It is good in many ways, but I found for the first half I was wondering whether she had ME or burn out from doing a ridiculously large number of hours working as well as being a mother of young kids. I wondered how many other doctors would just think, OK here's one who couldn't hack it like we did and had to drop out.

Mixed feelings.

 

[Mij]

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?

No solid biomarkers, that's the problem. I read a while ago that there are 500,000 people in Canada with M.E. and just recently 800,000. I don't believe this.

When I was diagnosed by an M.E doctor 26 years ago it was based on his many years of experience, my onset, history of relapsing etc. I had met several people through a support group who went to see him and they were dismissed as having M.E.

 

[NelliePledge]

It is good in many ways, but I found for the first half I was wondering whether she had ME or burn out from doing a ridiculously large number of hours working as well as being a mother of young kids. I wondered how many other doctors would just think, OK here's one who couldn't hack it like we did and had to drop out.

Mixed feelings.

Or maybe that helps some of them relate to it more easily.

 

[Keela Too]

It is good in many ways, but I found for the first half I was wondering whether she had ME or burn out from doing a ridiculously large number of hours working as well as being a mother of young kids. I wondered how many other doctors would just think, OK here's one who couldn't hack it like we did and had to drop out.

Mixed feelings.

That was my view too. In fact I didn't read to the end, but others told me it got better. I worry that most folk won't get past the first part.

 

[NelliePledge]

The group seems to have a diverse membership but attracting a fair few fairly recently diagnosed folk and people currently dealing with nhs clinics, folk asking about the usual suspect “treatments” and anything else that pops up on google. Dr H is pretty forceful in opposition to the NLP type brigade and explaining CBT is not a cure and GET is harmful. Which I believe is really positive in educating newer patients as well as those who haven’t been aware of the science and politics. There are some odd posts going up as well from members but so far I think the group is a positive. Element of selling the book but some positives there as well by suggesting once you’ve read it giving it to your GP with a covering letter from Dr H with key message about NICE guidelines and PACE. Not a bad idea which some people are doing. I am going to try this in the new year with my GP to see if it helps with awareness. I realise it may be water off a ducks back but I hope as something a bit different there may be a chance it could get read....