MEAction: Join Our Values and Policy Initiative! September 2019

Could it be helpful to refer to the Declaration of Helsinki, last paragraph?

Unproven Interventions in Clinical Practice

37. In the treatment of an individual patient, where proven interventions do not exist or other known interventions have been ineffective, the physician, after seeking expert advice, with informed consent from the patient or a legally authorised representative, may use an unproven intervention if in the physician’s judgement it offers hope of saving life, re-establishing health or alleviating suffering. This intervention should subsequently be made the object of research, designed to evaluate its safety and efficacy.

In all cases, new information must be recorded and, where appropriate, made publicly available.
[My bolding]

https://www.wma.net/policies-post/w...or-medical-research-involving-human-subjects/

Once again, apologies for skipping most of the thread and just popping in.
Thank you @Michiel Tack for working on this and thank you to all who contributed.

 

I've posted the final proposal in this thread, where others can sign and support it:
https://www.s4me.info/threads/a-pro...-commitment-to-evidence-based-medicine.11561/

 

https://www.meaction.net/2019/09/29...and-respect-are-essential-to-the-me-movement/

 

Interesting ME Action interview with Wilhelmina Jenkins about ethnicity and the undiagnosed:
https://www.meaction.net/2019/10/14...a-more-inclusive-movement-and-why-it-matters/

Powerful quote:

 

Thanks, @Michiel Tack! I know that most people in this thread are not from the US and that it’s difficult to picture the extent to which race and ethnicity dominate every aspect of the US medical system. I would be happy to address any questions that you have.

 

I don't think that is right. 'Clinical experts' do not come into it, only evidence. I am not sure what 'best practice' means other than practice based on reliable evidence in this context.

Experts may be useful in pointing out potential flaws in what looks like reliable evidence but that is about all. The whole point of EBM is to abandon the notion of practice based on 'expert consensus' as it used to be in the 1970s.

 

This is from the GRADE handbook:

Link: https://gdt.gradepro.org/app/handbook/handbook.html#h.3183vuv3ey12

 

I have come to think of the GRADE handbook as inexpert opinion!

 

I think legal action could be a very valuable component of ME activism in general and of the current #MEAction #NotEnough4ME campaign specifically. Even if an action (eg filing a complaint with an oversight body) is unlikely to "succeed" in terms of a ruling that forces the changes we want, it still exerts pressure on the target entity to do what we want just to avoid getting caught up in time-draining and money-sucking legal or oversight activity.

@Samuel, you seem passionate about this approach and well-versed in (at least some elements of) international law governing health-related human rights, which would figure into any such legal filings. Would you be interested in taking the lead on starting such an #MEAction initiative, as part of the NIH #NotEnough4ME campaign or as a stand-alone project? I bet there are other people in the ME community who would be interested in helping out with such an initiative, including the lawyers among us.

I'm interested myself and would love to be involved, though my plate is currently full with helping get other elements of the NIH campaign up and running. I would be happy, though, to chat now about potential options for a legal action.

I strongly encourage you to contact Ben HsuBorger, the #MEAction Community and Campaigns Director, who is coordinating the campaign and currently seeking ideas from the community as well as people who'd like to get involved in helping shape the campaign. He can most likely connect you to other volunteers who are interested in this kind of approach or have the legal skillset to work on it, and support you in getting a group effort off the ground. You can email him at ben@meaction.net or set up an individual phone call with him from the MEAction website. Even if you don't think you have the capacity to do much on this front, I think it's still worth connecting with Ben about it. You can tell him Claudia (my real name) suggested you reach out to him.

 

from an email
Researchers and clinicians weigh in on diagnostic criteria

 

Training opportunity to join our UK and Scotland social media teams

full details here
https://www.meaction.net/2020/09/03...ia-teams/?mc_cid=92117f4818&mc_eid=c1fdea04b1

 

Why on earth did they call themselves MEAction when it's so easily confused with ActionForME (who are alleged to support the PACE trial and the BPS view of ME)?