Petition: Review treatment of people with ME in Scotland

Well done @Emsho and team. You seem to have hit the spot !
Thanks.
Just need the whole GIRFEC/ data sharing / named person issue for kids hit on head now too...

 

Now here is something interesting @Emsho and all. The Scottish Parliament website carries all the public submissions relating to the debate but of all of them mine is the only one that is now corrupted and unreadable!

I think it would only be fair if it was restored to readability.

 

I think you also deserve a wee dram of your favourite tipple

 

I spoke to a nice Scottish lady in Holyrood and it seems my file opens in Chrome so I probably do not need to start conspiracy theories. I probably just sent them an old style PDF.

I used to drink the Macallan but I found it went down too quick and I stick to champagne now.

 

all submissions here:
http://www.parliament.scot/GettingInvolved/Petitions/PE01690

 

Yes, but mine is corrupted on several browsers. I cannot read it at all on mine.

 

It opens fine in Edge

 

I largely keep out of these discussions but it seems to me that, if it is accepted that current intervention strategies (CBT/GET) are at best useless and that existing resources could be 'repurposed' or lost then the lack of effective alternatives leaves us with a dilemma.

What may be the best we can hope for would be to 're'-instate a model which had been used in Belfast City Hospital but has now long been discontinued (I believe). Basically, those with a tentative GP diagnosis of ME/CFS were referred to s specialised unit at the hospital that ran a comprehensive bank of tests to exclude other conditions such as diabetes or cancer that can manifest initially as fatigue. An all clear for other conditions would result in referral back to the GP with a diagnosis of ME/CFS as likely (for what that's worth).

Maybe not what we would ideally wish for but better than nothing and much better than the status quo.

 

One of the speakers said she was struck by the number of responses.

 

Thank you to everyone involved in the submissions, the personal accounts are harrowing but necessary reading for the committee. The ME Action response dealt with all the issues that made me angry in the NHS submissions.

 

Yes, Grampian do not look to be exactly on the ball - whichever ball you might fancy.

 

Opens fine in Edge, Chrome, Firefox and Opera for me.

 

https://twitter.com/user/status/1060688790174552069

 

Code:

https://www.facebook.com/meactionscot/posts/2255795934741488

 

Just boosting this as happening tomorrow morning!

Jeane Freeman, Scottish Cabinet Secretary for Health and Sport, will be giving evidence on ME to the petitions commitee. Should be fascinating to hear what she says, the questions the committee asks her, and hopefully what she will be looking to do about ME in Scotland.

#MEAction Scotland's best estimate is that it'll start around 10am or 10:30am. I'll try to remember to post here when it does, but rather busy day tomorrow!

Watch live here: https://www.scottishparliament.tv/

@meactionscot will be tweeting about it through the morning too.

 

Code:

https://www.facebook.com/meactionscot/posts/2257091911278557

 

Starting now!

Watch Live:
Direct link to committee room 2: https://www.scottishparliament.tv/channel/committee-room-2

Watching Johann Lamont and Jeane Freeman debate the previous petition on MRI scans for Ocular Melanoma, I'm rather impressed by both of them!
Solid questioning from Johann Lamont in particular, am sure she'll do the same for ME.

 

Paraphrasing, "Action for ME will be creating educational materials for GPs in Scotland, including webinars". I hope that's nothing like their Toolkit for Professionals that has been looked at recently.