Gary Burgess - The ME show, and updates about Gary's health.

I'm working on producing a transcript right now so that I can process what she said properly.

[ETA: if anyone wants to see it, message me]

 

I have no time at all for Sarah Myhill so please fire away.

 

OK - I might start a new thread elsewhere - since there will be a lot to get through, and I don't want to clutter up this one too much.

[ETA: new thread here: https://www.s4me.info/threads/dr-sarah-myhill-on-the-me-show-series-2-episode-6.8454/]

 

It was a good interview. I largely agreed with everything she said although i think that the name and aims of foward MR have been to conservative for my level of desperation.
Regarding unity, I wouldn’t want this to be an undeclared stick people, then use against IiMe, famous for standing alone. Everyone has and can unite about NICE needing upgrading, things like membership and activity of CMRC and collaboration with MRC, past divisions over the direction in Scotland were big splitters and i think that on these issues, iime standing against were correct. I do think now iime can be too contrary and antagonistic but I just didn’t want the general feeling to be oh those good charities uniting and by possible implication iime bad for not when AFME, meruk, mea, Ayme etc united on CMRC i think that it Was wrong. I do absolutely think coming together in a loose fashion on some issues where there’s general ageement is best, although even on NICE i think that when it comes to it there will be division on its committee, what they should do and what they do do. I note that AFME and mea were rather detached from the #Mm Movement which was also about people coming together on issues to affect change but in a more direct action type way.

 

https://twitter.com/user/status/1105045756841549826

 

I know. Can't be bothered to point it out to them. And the quote they use as well, are they agreeing they should improve the language they use so that it's more in line with the other charities, or are they saying that the other charities should fall in line with their GET-lite language? I know which my money is on.

 

"Charities "need to work together to present a united front"

Hmm doesn't that include letting people know the ME Show is sponsored by the MEA.

 

Thanks @Gary Burgess for another great interview! It was a really good listen and I especially appreciated hearing how optimistic the Countess of Mar sounded regarding the NICE guideline review.

 

Morning all.

Episode 8 is live this morning. I speak to Dr Nina Muirhead who was diagnosed with ME two years ago.

She now devotes much of her time to raising awareness of the illness among her medical peers.

Have a listen by searching for The ME Show in iTunes (pleeeeease rate, review and subscribe) or stream here: www.meassociation.org.uk/themeshow

 

Hope it's OK to give direct link here: https://www.buzzsprout.com/172265/967167-episode-eight-dr-nina-muirhead.mp3

Slightly less direct: http://www.buzzsprout.com/172265

 

" I think with ME we are in different situation, it's almost like an emergency situation, where what a certain generation of doctors have been taught is actually totally wrong, and now the science is emerging to refute that. The patients have been very constant with their story and I think that doctors and teachers everywhere need to listen to that"

"Unless you've had it [ME] you really don't have a clue as to how awful you can feel and how it's almost like having concussion, and you have no control over your energy levels, you can't even think straight at times."

excellent interview @Gary Burgess

 

An important issue that Nina Muirhead also raised in her interview, that was also echoed by Gary,
was that at the beginning of her illness when she was trying to get a diagnosis/find out what she had,
she looked at the NICE guidelines on CFS/ME.
It seemed a possible fit but when she saw the recommended treatment was GET she subsequently ruled it out.

yet another reason why GET/CBT should be removed pending the new guidelines.

 

Well said!

 

Morning all.

Episode nine of The ME Show is out, today. I speak to MP Carol Monaghan about Prof Michael Sharpe, ‘that’ Rod Liddle column, the mood in parliament and much more.

Stream: www.meassociation.org.uk/themeshow

iTunes: https://itunes.apple.com/gb/podcast/the-me-show/id1374903449?mt=2

Spotify: https://open.spotify.com/show/5WBZAoe9zuy9O5HmxwAVIf?si=UQ_SFTSXT52jZqbaixwIxQ

 

That lifted my spirit. Thank you, @Gary Burgess !

Carol Monaghan is organising an ME afternoon tea on Friday in Glasgow

 

Good to know, I was wondering why I couldn't listen to the podcast on MEA's website:

https://twitter.com/user/status/1110076142134935553

 

Thanks, Gary.

I've received an email as usual with the following info and links:

Programme: The ME Show

Station: ME Association Podcast

Date: March 25, 2019

Podcast:
https://www.buzzsprout.com/172265/1001668-episode-nine-carol-monaghan-mp.mp3

Ref: http://www.buzzsprout.com/172265

Item: Episode 9: Carol Monaghan MP

 

I tried the first link and got the following warning:

"Warning: Potential Security Risk Ahead

Firefox detected an issue and did not continue to www.meassociation.org.uk. The web site is either misconfigured or your computer clock is set to the wrong time.

It’s likely the web site’s certificate is expired, which prevents Firefox from connecting securely. If you visit this site, attackers could try to steal information like your passwords, emails, or credit card details.

What can you do about it?

Your computer clock is set to 25/03/2019. Make sure your computer is set to the correct date, time, and time zone in your system settings, and then refresh www.meassociation.org.uk.

If your clock is already set to the right time, the web site is likely misconfigured, and there is nothing you can do to resolve the issue. You can notify the web site’s administrator about the problem.

Learn more…"

 

Yes, the security certificate for the MEA's website expired. They have posted that they have taken the necessary steps to rectify the issue but it may take some time (probably less than a day I would guess) for it to return to normal.
In the meantime, if you just want to stream the podcast then the Buzzsprout link above is probably the easiest one to use i.e. it doesn't rely on iTunes or Spotify.