ME/CFS HEALTH

Talks by health professionals, patients and advocates about ME/CFS.

ME/CFS is short for Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome.

[ME/CFS HEALTH @mecfshealth]

Health professionals and patients unite in the mini-documentary After Unrest to demystify, the severe disabling disease M.E/CFS. Inspired by and with thanks to @jenbrea's @unrestfilm. After Unrest (27mins) - https://t.co/ceENSJFSat

[ME/CFS HEALTH @mecfshealth]

What would an architect need to know before designing an ME/CFS friendly home? Emerge Australia is posting questions from student architects facing this very question. Visit their facebook page to add your voice to the mix!

[Emerge Australia @EmergeAus]

Some of you may know that there is a team of student architects local to us in Melbourne currently completing a project on ME/CFS and living environments. We've agreed to ask you some questions on their... https://t.co/c9yj8dRw9U

[ME/CFS HEALTH @mecfshealth]

Don't let @CDCgov repeat a terrible mistake. Demand #pwme and expert input for ME treatment guidelines! Sign and share the petition. #mecfs #NoMoreShoddyWork https://t.co/1t8BCaAmsU

[Dr Mark Guthridge @Dr_M_Guthridge]

Are you at risk of getting #MECFS, #autoimmune disease, other #chronicillness?

This paper identifies immune profiles in 100s of people and identified signatures that may predict future immune responses; strong vs weak; healthy vs pathogenic
@PNASNews
https://t.co/AWj3hiuKFg

[ME/CFS HEALTH @mecfshealth]

@EmergeAus Being able to move again and pick up all the things dropped around the bed during a crash.

[ME/CFS HEALTH @mecfshealth]

@daisy_court75 @twitchyspoonie #afterunrest is a good start, a short science based mini-doco with a few patient stories but I agree we need more, and to share them with MP's.

[ME/CFS HEALTH @mecfshealth]

Thanks for highlighting this great little video about ME/CFS. #mecfs (in 3mins and 9 secs)

[Emerge Australia @EmergeAus]

A really beautiful 3 mins and 9 seconds.

Just came across this while including it in this week's research and media digest. Highly recommended. https://t.co/nexxzOZLMj

[ME/CFS HEALTH @mecfshealth]

@insightSBS This is why patients are pulling together expert health professionals and creating documentaries to educate Gps about how exercise affects them. Exercise and ME/CFS is covered by a physiotherapist in this video (from minutes 10:38). https://t.co/OuZUE5fXDu

[ME/CFS HEALTH @mecfshealth]

@aaron_physio Yet there is a role for physios helping patients with ME/CFS. Mark Barrett from the Gold Coast explains in this video: https://t.co/OuZUE5fXDu His talk starts at 10:36. Please be aware the CPET testing he describes is only safe for mildly affected patients.

[ME/CFS HEALTH @mecfshealth]

@Dr_M_Guthridge In the video #afterunrest, Physio Mark Barrett says: "we really need a new definition for exercise as current definitions don't suit the ME/CFS case"

Instead of prescribing 'exercise' Gps need to learn how to offer guidance on regulating activity and rest using heart rate.

[ME/CFS HEALTH @mecfshealth]

Credit for the video goes to Fibromyalgia, CFS Gold Coast Support Facebook Page: https://t.co/Gpz88RIepu

[ME/CFS HEALTH @mecfshealth]

Therese Fossheim, a leading physiotherapist from @PhysioLogic_GC, explains how to measure metabolic impairment and exercise intolerance in ME/CFS patients and how that informs patient care - in a groundbreaking talk on the Gold Coast, Australia.
@MEActNetAu @GC_Health

[ME/CFS HEALTH @mecfshealth]

Full video:
00:00 Welcome by Kathy Dallest
04:50 David Tuller - https://t.co/f80LBbiXBs
28:07 Therese - Physio Logic Robina - https://t.co/rYrVTKWvtx
39:04 Kathy Dallest
54:00 Q&A

[ME/CFS HEALTH @mecfshealth]

@johnamuir @MEActNetAu @4WorkWell And/Or different levels or stages of impairment?

[ME/CFS HEALTH @mecfshealth]

@johnamuir @PhysioLogic_GC @MEActNetAu @GC_Health @4WorkWell Absolutely. Therese mentions in her talk that, in 50% of their patients' a one day CPET test shows results. Do you think that in moderate/severe cases a portable CPET test machine could be used to show disability & impaired metabolism during their ADL's rather than exercising?

[ME/CFS HEALTH @mecfshealth]

@johnamuir @PhysioLogic_GC @MEActNetAu @GC_Health True, common sense is often missed in this disease. It's rare to find anyone measuring disability in ME/CFS using Cardiopulmanory Exercise Testing like @4WorkWell and @PhysioLogic_GC - there is a lot of ground to be broken! :)

[ME/CFS HEALTH @mecfshealth]

@sjmnotes brilliant news!

[ME/CFS HEALTH @mecfshealth]

@TinaRodwell1 @CMonaghanSNP Exposing patients to sensory stimulation makes patients worse. Professor Don Staines and Professor Sonya Marshall-Gradisnik explain why in #AfterUnrest at 17:26. https://t.co/ceENSJFSat

[ME/CFS HEALTH @mecfshealth]

@profmsharpe Have you watched #AfterUnrest @profmsharpe?
It offers a positive reality, not just a vision - by health professionals and researchers.

https://t.co/ceENSJFSat. After Unrest - Where health professionals and patients unite.