Discussion in 'General ME/CFS News' started by Robert 1973, Jan 15, 2018.
Petition has reached 5000 now
Update from Craig Robinson now more than 120 letters
I have taken the decision to share what I wrote in my letter to the GMC on my blog. I hope by doing so others might be encouraged to also write in with their own experiences:
Excellent letter, @Keela Too. You make your points very clearly and well. I hope they read it and take it seriously.
Brilliant, Sally/@Keela Too. Just want to say that the link https://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me doesn't seem to work.
Excellent letter @Keela Too!
That link gives me an error message too @MeSci.
Could you check it now. Seems I copied the link in wrongly... Hoping it works now
Edit: Thank you both for the alert @Invisible Woman @MeSci
Yes - it works now.
Excellent letter. I like the way you have noted how the PACE authors have never set the record straight for PwME (despite their being best placed to do so, and despite their proclamations of only wanting to do their best for PwME).
Very useful. It's a shame they don't do this. I find pacing with a HR monitor really useful.
Seems there are a few more doctors talking about this now.
This helps, but I do question the use on the POTs plp. If I go by mine, I would literally do nothing, and also I have a question that no doctor has been able to answer, Once I am on beta blockers, how do I know what my new AT is??? Do I use the old one? or do I have a new one???? How do I pace beta blocker vs not???
I agree. I think in the end you learn your own personal boundaries. I have always has a higher than average HR and lower than average blood pressure.
Also Sue Jackson has talked about beta blockers on her blog.
I was disappointed when after having paid to see an M.E. specialist privately I was seeing my GP about a new sick note. I tried telling her that specialist had said I needed to use a heart rate monitor but she just wasn’t interested.
Dr Ms petition is now on 5500 still ticking over but would be good if it could get more signatures before the deadline- 2 weeks to go I think.
This petition has hit 6000 today around a week to go till they hand it in
Did I mention there are over 130 complaint letters sent to GMC
I've been making this observation over quite a long time now, because NI credits are linked to what kind of benefits you get.
It will be interesting to see how they respond.
I wonder when that will be. I can imagine it won't be soon.
Separate names with a comma.