Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

[dave30th]

I spotted 2 apparent errors in the document:

Thanks. A partial sentence that was not supposed to be there.

 

[Hutan]

Thanks very much for writing about the petition @dave30th.

The petition has had 73,000 views. (A substantial number of those have been by me, but, even so.)

Here's the link: https://chng.it/xwQ9bGgcdL

 

[Andy]

4,489 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

[Andy]

4,895 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

[Robert 1973]

I’m a bit surprised that none of the major UK ME/CFS charities are listed as signatories. Have they been asked if they would like to support it?

 

[Sly Saint]

yay 5000

 

[Trish]

There are 281 comments so far. I don't think the number is displayed anywhere, but I can download them to a spreadsheet.

The number of comments is shown on the page headed What's new.
There are 323 comments so far.

 

[Hutan]

Thanks so much to the European ME Coalition (EMEC) for supporting the letter.

 

[Hutan]

A chart of the increase in signatures over time. It doesn't include signatures from today, NZ time. You can see things have plateaued. Please do keep sharing the petition link https://chng.it/xwQ9bGgcdL if you can.





Here's the list of countries represented, and number of signatures. 57 countries.
Top ten: UK (1586); Australia (560); US (449); Netherlands (382); Canada (373); Norway (321); France (281); Germany (194); NZ (168); Denmark (151)
Fantastic to see some of the countries we hear less from represented, such as Bulgaria, Mexico and South Africa to pick a few.

Argentina 2
Australia 560
Austria 17
Azerbaijan 1
Barbados 1
Belgium 111
Belize 1
Brazil 6
Bulgaria 2
Canada 373
Colombia 1
Costa Rica 1
Croatia 4
Cyprus 1
Czech Republic 3
Denmark 151
Estonia 1
Finland 21
France 281
Germany 194
Gibraltar 1
Greece 5
Guadeloupe 2
Hong Kong 1
Hungary 1
Iceland 1
India 4
Ireland 24
Isle of Man 1
Italy 47
Jersey 1
Lithuania 1
Luxembourg 1
Malaysia 1
Mexico 5
Montenegro 2
Netherlands 382
New Zealand 168
Norway 321
Philippines 1
Poland 3
Portugal 5
Réunion 1
Saudi Arabia 1
Serbia 2
Singapore 1
Slovakia 1
Slovenia 1
South Africa 11
Spain 65
Sweden 78
Switzerland 23
Thailand 1
Trinidad & Tobago 3
Turkey 1
UK 1586
US 449
Grand Total 4934

 

[Hutan]

Trial By Error: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid; Senators United on Long Covid

https://virology.ws/2023/09/07/tria...-in-long-covid-senators-united-on-long-covid/

There's a great comment by @Peter Trewhitt on David's blog - it summarises the issues well.

 

[Sly Saint]

has anyone contacted/tagged @PhysiosforME , Doctors with ME (@EducateME ), Long Covid Physios, Invest in ME (@Mike Harley )

 

[Hutan]

I think getting more local and national organisations added to the list of supporting organisations in the Open Letter thread is very important.

We are working on a list of ME/CFS and Long Covid related organisations and whether they have been contacted or not, with a view to doing more contacting. If you have contacted any organisation to ask them to support the petition and circulate it to their members, please do let us know. If you are well-placed and willing to contact an organisation, please let a moderator know.

If you can speak for an organisation and they are willing to support the open letter and have their name listed on the Open Letter thread, please let us know.

We are having conversations with several large organisations about how they might be able to help.

 

[Sly Saint]

it's a shame that other than tagging there is no other way of contacting members (eg by email), particularly those who maybe don't come on the forum very often.

(I know she has retired, but @Valerie Eliot Smith might be interested).

 

[Hutan]

Thanks very much to Post Viral Research Aotearoa for supporting the open letter.
https://www.pvra.nz/
This is a New Zealand-based research foundation.

 

[Andy]

5,264 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

[Andy]

New social media posts

Facebook: https://www.facebook.com/sci4me/pos...PF7CdUAqPtEE92b4cbMuQKCmAvzAs9NAgRMmfHcbFm73l
Mastodon: https://med-mastodon.com/@s4me/111046184930246987

 

[Mike Harley]

has anyone contacted/tagged @PhysiosforME , Doctors with ME (@EducateME ), Long Covid Physios, Invest in ME (@Mike Harley )

Thanks for the nudge, oddly I've just shared it on facebook and then come on here. Will share on Twitter/X shortly, though I don't use it much anymore (Elon Musk etc)

 

[PhysiosforME]

has anyone contacted/tagged @PhysiosforME , Doctors with ME (@EducateME ), Long Covid Physios, Invest in ME (@Mike Harley )

Hello
We've signed it individually- I think we'd be happy to do a supporting letter as physios for ME
if that would help. Please let me know
Michelle

 

[Andy]

5,495 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

[Trish]

Hello
We've signed it individually- I think we'd be happy to do a supporting letter as physios for ME
if that would help. Please let me know
Michelle

Thank you Michelle. I think a letter from Physios for ME in support would be good. I wouldn't want hundreds of people bombarding them with individual letters, hence the petition, but I think a letter from a specialist professional organisation like Physios for ME, especially now with your published book, would add useful weight behind the requests for action.