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

Sometimes it is a conspiracy.

And this is one of those times.

 

Terrific to have the support of Action for M.E. (AfME) in the United Kingdom for the open letter and promoting the petition. Thank you.

 

Tack! RME Kronoberg Blekinge in Sweden for your support, it is much appreciated.

 

Muchas gracias CONFESQ in Spain for your support!

That brings the number of ME/CFS organisations supporting the open letter to 29. We would love to get more, so, if you have an association with an ME/CFS or Long Covid organisation, it would be terrific if you could inform them about the open letter. Or let a moderator know the contact details. It would be great to have more organisations from outside Europe.

 

Kia ora to M.E. Awareness in New Zealand for signing the letter and supporting the petition. Thank you.


@Robert 1973, thank you very much for offering to help.

Speaking generally, we haven't yet contacted all the organisations and people we can think of. We are waiting for replies or decisions from quite a lot of organisations - we know that meeting schedules mean that a decision to sign can't necessarily be made quickly. Some of these organisations are still helping a lot in the meantime by promoting the petition.

A very small number of organisations feel conflicted about supporting the letter because they are associated with someone in the Cochrane IAG. They are working on getting progress on the issue in other ways.

Robert, your help would be great. We'll be in touch via the conversation facility in the next day.

 

Thanks @obeat. I'll send you a message re where we are at with those.

 

Thought some of you might be interested in the share of signatures by country/region. This is as of now-ish, a total of 6950.
The segments follow the legend like a clock, with the UK from 12 o'clock to 4 o'clock.

64 countries represented now. Every country with over 100 signatures got its own slice of the pie.

I've also plotted cumulative country/regional numbers by day, but there are no patterns of note, other than a gradual increase in all regions over time.

 

It would be nice to think that the very small number of signatures from Africa, Asia and Central and South America indicates BPS ideas on ME/CFS are less of an issue in those regions, but I doubt that is true. Looking at the literature in China in English, there is some uncritical acceptance of BPS ideas.

Perhaps we will see a strategy similar to that used by cigarette companies. When knowledge of the harm caused by cigarettes increased in their traditional markets, tobacco companies just doubled down on pursuing the markets in other countries. I hope we can support more ME/CFS organisations to be established and to be well-informed.

 

It’s currently on 6999 supporters

 

There are quite a lot of signatories from the Scandinavian countries and the Netherlands too, particularly given their relatively low populations.

But, yes. I think it's a bit of a number of things.

One is that there may not be as many ME/CFS (and Long Covid and QFFS and post-ebola syndrome and other similar disease) support groups in some other countries to publicise the petition to their members.

Two, sometimes these organisations only operate on social media platforms that some of us doing the contacting aren't on - especially true of the Long covid groups.

Three, there are language difficulties that make it hard for us to find the organisations, and for the organisations to deal with our request

Four, people are going to be a lot more willing to sign if they have had some exposure to the problem. In particular, people in non-ME/CFS groups and in countries with very limited medical services may not have had that exposure. (i.e. they may not have much in the way of support, but at least no one is referring them to a CBT or GET course)

Five, we contacted the organisations that were easiest for us first, and so organisations in countries where we didn't have contacts or where the language is a barrier have had less time to get back to us.

If anyone has knowledge of ME/CFS groups in some of the countries we don't have many signatories from yet, please do post about them or talk to a moderator. The whole process is helping us build up a useful list of active support groups.

I wonder, for example, what it is like to have ME/CFS or Long Covid in Russia or Thailand or Zimbabwe, or post Ebola syndrome in Sierra Leone. Does the 2019 Cochrane Exercise Therapy review influence these people's care? If @Mike Harley is up for it, there's whole lifetime of marathons to do.

 

Might be both technical and political constraints in the mix too. People in less free societies probably tend to have less access to relevant info, the opportunity to discuss it, and pressure the authorities to more effectively deal with it.

 

So nice to see the 7000 signature mark pass.

Just because I have some time to fill, (and maybe because my country is currently out front, ahead of Norway by a nose) here's the roll of honour of signatures per capita:
Figures are signatures per 1 million people; showing the countries with more than 10 signatures per 1 million people

New Zealand: 75
Norway: 73
Denmark: 32
United Kingdom: 32
Australia: 31
Gibraltar: 31
Netherlands: 24
Sweden: 17
Canada: 16
Isle of Man: 12
Belgium: 10

Edit to add an honourable mention - Grenada (of Garner scuba diving fame - with a score of 8)