Hopeful ME/CFS patient

Life took an unexpected turn for the worse when I came down with ME/CFS in 2013.
Hoping for testing & treatment discoveries soon so we can live lives again.

[Hopeful ME/CFS patient @MECFSHopeful]

@post_exertional They said in 2017, possibly earlier, that they were about a year away from a diagnostic test for ME. It was based on their calcium ion theory.

Then things went very quiet.

Try not to get your hopes up (although I'd be overjoyed if they actually achieve this).

[Hopeful ME/CFS patient @MECFSHopeful]

@Healthy_Control @dbkell @Comm_in_Care @itsbodypolitic @SWorkAllianceRM @ahandvanish @COVIDOversight @trishgreenhalgh @resiapretorius @microbeminded2 @BeateJaegerMD @MVGutierrezMD @dgurdasani1 @PeoplesCDC @PutrinoLab @patientled Snap! She blocked me ages ago, before I even knew who she was.

She seems to have done it to lots of ME pts.

[Hopeful ME/CFS patient @MECFSHopeful]

@arisonsned @guardian Yes, I think I've seen people say they haven't given a very fair reflection of the illness and the zero treatment options.

George Monbiot has published some good articles in it though.

[Hopeful ME/CFS patient @MECFSHopeful]

@haussamen Brilliant to see! Well done to your daughter.

[Hopeful ME/CFS patient @MECFSHopeful]

@abcnews @EricTopol @abcnews - this study highlights the increased risk of complications after 2nd and 3rd infections compared to the 1st.

https://t.co/5miJasTgAC

[Yaneer Bar-Yam @yaneerbaryam]

Extremely important paper on: Outcomes of Covid Reinfection

Compared to those with first infection, reinfection led to increased risk at 6 months of: mortality by 2.38%, hospitalization 9.5% and post covid medical events 19.6%.

1/
https://t.co/UZGraPtF29

[Hopeful ME/CFS patient @MECFSHopeful]

Hi @abcnews - the belief of Assoc Prof Nick Wood, that subsequent Covid infections are less serious than the 1st - contradicts evidence that shows this isn't the case.

@EricTopol and many others are aware of such findings.

Cheers 🙂

https://t.co/OHNdexEJs8

[Hopeful ME/CFS patient @MECFSHopeful]

@D_Bone Your video prompted me to try this.

I stood up and put my left hand at waist height for about 2 mins.

When I put it next to my pink right hand, the blue/purpleness was startling. And there was mottling, which I'd never really noticed before.

[Hopeful ME/CFS patient @MECFSHopeful]

@D_Bone My hands go purple/blue in similar situations. Don't think there's mottling, the colour is uniform.

My feet do too.

[Hopeful ME/CFS patient @MECFSHopeful]

@KashPrime @theRavenApp Great idea, I hope many countries follow your example! Best of luck.

[Hopeful ME/CFS patient @MECFSHopeful]

@KCSteckel Ah, didn't realise that. Cheers 🙂

[Hopeful ME/CFS patient @MECFSHopeful]

Not sure what to make of this study...

'Fibromyalgia is another common, debilitating and poorly understood condition, which frequently occurs together with ME/CFS...'

I've never heard anyone credible say fibro frequently occurs with ME/CFS.

https://t.co/5OX7iOT62r

[Hopeful ME/CFS patient @MECFSHopeful]

@exceedhergrasp1 Interesting! I hope your sleep improves soon.

[Hopeful ME/CFS patient @MECFSHopeful]

@ABrokenBattery @adambeyoncelowe @davidtuller1 Thank you very much for sharing this crucial info.

Slow progress is infinitely better than none!

[Hopeful ME/CFS patient @MECFSHopeful]

@drclairetaylor @whatthehecha @Gronnet It's brilliant that patients in the UK will have an informed Dr to see.

If I move back I might become a patient!

[Hopeful ME/CFS patient @MECFSHopeful]

@Colin1000001 @SuffolkNewswire @MEAssociation @YLvsCancer Good luck, Colin!

[Hopeful ME/CFS patient @MECFSHopeful]

@HarryLeeming @AmyRemeikis is an excellent and compassionate Australian journalist who would be well worth asking.

[Hopeful ME/CFS patient @MECFSHopeful]

@MEAssociation @NNUH Great work!

[Hopeful ME/CFS patient @MECFSHopeful]

@8Homeslice8 @karenphysiocouk Heaven forbid someone takes a 'medical" approach to our illness!

If that was said to cancer or HIV patients there'd be uproar, but we have to endure it.

I'd struggle to not challenge everything they said!

[Hopeful ME/CFS patient @MECFSHopeful]

@8Homeslice8 @karenphysiocouk All sounds like total rubbish, sorry you had to sit through it.

Wessley said ages ago if someone hit you with a car, you wouldn't look for the registration number, you'd focus on the person. The bird thing sounds eerily similar.

[Hopeful ME/CFS patient @MECFSHopeful]

Couldn't agree more!

[Alan Baxter ♛ @AlanBixter]

I think before a government refuses to limit the spread of COVID, they need to add Long COVID to the NDIS, otherwise there is no incentive for them to do their job properly.