12CentFamily

Advocating 4 my husband, confined to bed in a dark room, unable to care for himself. CDN government research funding = 12 cents per diagnosed patient. #MECFS

[Jennifer 💙💚🇺🇦 🌈Stand up for what is right. @Jennyfurfuls]

I'm still bangingnon about giving the Pfizer vaccine at 21 days as intended. An A &E nurse has tested positive for covid, after having his 2nd dose postponed. I still think it's unwise to mess with the recommendations for this particular vaccine.

[12CentFamily @Adv4K]

@erikmoldwarrior @CIHR_IRSC @CortJohnson @MillionMissCan @theJagmeetSingh Sorry to hear you’ve been affected. It’s not the China virus, let’s keep ignorant politics out of the dialogue of #ME

[12CentFamily @Adv4K]

Dec. 2016, in Panama on vaca, the kids and husband fought a virus. Both kids recovered. was never 100% again. #MECFSfirst took his energy. Aug. 2016 @CIHR_IRSC stated there is “no evidence that CFS is a disease”. @CortJohnson @MillionMissCan @theJagmeetSingh

[Millions Missing France @MillionsMissgFr]

@DrTedros Dear @DrTedros, in 2018 the International Alliance for ME (https://t.co/c28NaxM2wn) sent you a letter on ME Awareness Day (May 12) asking for recognition, biomedical research and education of healthcare providers on ME: https://t.co/U0GAWCwjLw

Could you please act on it now? 🙏

[Janet Dafoe @JanetDafoe]

@DrTedros Also, Dr Davis is conducting a large, multi-site molecular investigation of Covid-19 patients converting to ME/CFS. I am his wife and can facilitate you getting in touch with him.

[Janet Dafoe @JanetDafoe]

@DrTedros .@DrTedros Ron Davis, PhD used to chair WHO’s Strategic Research Committee. Stanford Prof of Genetics & Biochem. Director of SU Genome Tech Center. His son has ME/CFS and his research is entirely focused on that now. World expert. Happy to consult with you!

[12CentFamily @Adv4K]

Thank you but know that your tweet must lead to action. My husband is #severeME

[Tedros Adhanom Ghebreyesus @DrTedros]

We hear you. My colleagues will reach out to you. Thanks.

[Scott Simpson -- Remedies Online Counseling 🏳️‍🌈 @RemediesPodcast]

I'm looking to interview a woman for my Medical Error Interviews podcast who has:

premenstrual dysphoric disorder (#PMDD)

I only recently learned of this torturous illness -- more people need to be aware -- especially physicians.

If you know someone, point them my way please.

[Dan 🦠➡️🧠🔥 @Dan_Wyke]

Don't worry #longhaulers + #LongCovid patients. If the experience of ppl with #MECFS is anything to go by, there's a psych researcher somewhere busily manipulating the data to "prove" that all you need to recover from your devastating multi-system assault are 12 sessions of CBT.

[Scott Simpson -- Remedies Online Counseling 🏳️‍🌈 @RemediesPodcast]

I had 100% faith in medical journals.

Then I learned they are not about publishing science.

It's about making money.

Journalist @davidtuller1 exposes unethical @BMJ pushing 'music therapy' for #MEcfs.

This is why people doubt #medical journals.

https://t.co/VY49nOnoGa

[Scott Simpson -- Remedies Online Counseling 🏳️‍🌈 @RemediesPodcast]

What kind of quality and competent #Epidemiology doesn't include data on #LongCOVID patients?

This is how the medical system marginalizes and invisibilizes illnesses and people they don't want to -- or know how to -- treat.

What say you Dr Tam @CPHO_Canada?

[Daisy Fuentes Marx @DaisyFuentes]

If anyone else is outraged by the absolute fuckery going on in this country check this out. It’s genius. And if you’re a bit bored give it a go 🙌🏼 When it comes to people’s health, the blatant lies, hypocrisy, stupidity & selfishness in our government should be called out.

[File411 @File411]

I just can’t watch this video the same now that I’ve spent a few moments quadruple checking what our State Dept did.
I want to rage on the Trump Admin with my sharp & pointed words of criticism
I did not think I could loathe the Trump Admin any more
https://t.co/MN5tmbfvRi

[George Eaton @georgeeaton]

Coronavirus is a reminder that the welfare state is not “a burden” but a form of collective insurance against life’s hazards: ill-health, disability, the death of a partner, unemployment. It should never have been so weakened by cuts.

[12CentFamily @Adv4K]

@wossy @neilhimself Someone aught to talk to Johnson about procuring ventilators through the EU as they extended an invitation.

[12CentFamily @Adv4K]

No words....

[Neil Gaiman @neilhimself]

Better to die British, than be saved by European co-bought ventilators, I suppose.

[Liz Burlingame @LizMEActGA]

@claudiamcarrera @MEActNet @NINDSdirector The call was Enraging. As a disease community, #pwME are still waiting for the basics. At the least, provide set-aside funding NOW! We face a Clinical Care Crisis! @NINDSdirector you are not listening! #NotEnough4ME

[Claudia Carrera @claudiamcarrera]

@MECFSNews @MEActNet @NINDSdirector That comment is the blind & biased perspective of a man who does not understand basic elements of #MEcfs (PEM =/= fatigue), is not up on research findings (biomarkers & txs are achievable), refuses to listen to experts (#pwME & #MyalgicE researchers), and lied to my face today.

[Claudia Carrera @claudiamcarrera]

@MEActNet @NINDSdirector NO Dr. K, figuring out #MEcfs will take MONEY, not a miracle. We have seen the world mobilize some 500K+ researchers and $Billions in funding, rightly so, to tackle #COVID19 in months. When u *actually* care about something & prioritize it, u do what it takes to make it happen.

[Millions Missing France @MillionsMissgFr]

@claudiamcarrera @MEActNet @NINDSdirector No worries Claudia. This doesn’t change what ME research desperately needs — funding! Whether it’s 500, 1K or 50K, we won’t reach that number until there is a solid commitment from @NINDSdirector @NIHDirector to set aside funding for ME & get more researchers into it.