UK: Physios for ME

Another day another webinar! https://twitter.com/user/status/1329506986522791936
Today had a COVID emphasis for rehab professionals but we were able to present to over 400 participants about ME and the abnormal physiological response to activity. We've had some great feedback already and so hopefully a few more professionals now know more than before! The link should be up on youtube soon so I will share when I have it

 

Youtibe link
https://twitter.com/user/status/1330098888750010370

 

here's the direct link to our session

https://www.youtube.com/watch?v=qLE5EZ8N_T0

we start about half way through

Almost at 1.2k views already which we are quite pleased with!

 

^^^ The Physios for ME section begins at around 27.40 minutes into the video

 

Well done, @PhysiosforME - really appreciate your great work on this.

 

One thing I've noticed is how insular physicians with LC act compared to other medical specialties, who far more openly speak out in public. Physicians seem to mostly make private groups and keep discussions secret.

Seeing the very people who live by exercise share the same harsh lessons that the patient community has lived with for decades is a significant moment in history. It's slow but the momentum is building. And really fortunate that it happened at a time when the relevant material was finally available and promoted. It will be like a chain reaction reaching critical mass.

https://twitter.com/user/status/1331694724135129092


https://twitter.com/user/status/1331736767783985157


https://twitter.com/user/status/1331697186589925376


https://twitter.com/user/status/1331931558027071489

 

https://twitter.com/user/status/1332085036498219009

 

medical education via twitter what a world we live in . i wonder if there will ever be a major public inquiry into the abject failure of medical education and the politically motivated creation of multiple quangos ccgs that have no public say in how they operate and no consequence for there gross waste of public funds in promoting ideology over proper science .

 

sigh

What motivated someone to post this today is... I don't know.

https://twitter.com/user/status/1335618360663478277


Quality "assured". Turns out when you disable quality control... well, quality is definitely not assured.

 

Here's our latest blog about our submission to the draft NICE guideline https://www.physiosforme.com/post/physios-for-me-view-on-nice-guidelines

 

Thank you so much for all your work on this, much appreciated. It is so good to have professionals on our side, speaking up for us, defending us.

 

Absolutely and this is what was tragically missing for so many years, so many decades.

 

Your work on our behalf is brilliant @PhysiosforME

As well as revising the NICE guidelines re: GET, they should also be recommending using heart rate monitors to help with pacing. It's the only thing that's been proven, (scientifically, and not just pulled out of thin air by someone paid to make it up), to be of any benefit.

 

I agree, but...

Arguably, it has made a difference. Twitter has been very effective at enabling people to get messages out about the existence of long Covid, the impact of the symptoms, the numbers of people suffering, and the whole controversy about GET.

It's not going to change the minds of practitioners with entrenched views about exercise, of course. But it offers both professionals and patients a way to challenge them – and by doing so, they draw attention to the fact that these 'treatments' are contested. This has real potential to limit harm.

Should it be done like this? Course not, it's ludicrous. But given the history, it's a whole lot better than the alternative: a whole new cohort of people falling victim to potentially harmful treatments because they weren't aware of the red flags.

 

More good news from us - we got ethics approval for our research study "Feasibility of investigating oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities"

You can read more here
https://www.physiosforme.com/post/an-early-christmas-present-for-physios-for-me

 

Brilliant. Well done.

 

Physios for ME present to Physiotherapy Students

https://www.physiosforme.com/post/p...rapy-students?postId=6009c109fc720f001790af72

Code:

https://twitter.com/PhysiosForME/status/1352317364822540290

https://twitter.com/user/status/1352317364822540290

 

Research update - delays and wins

https://www.physiosforme.com/post/research-update-delays-and-wins?postId=600aa26d30dc47001702ec9a

 

Great news and good timing. 9-11 April 2021.

10 days before the Final Version of the new NICE GDL are produced.

Also a good lead in to ME Awareness, #MM and DecodeME