Recovery

Organization consisting of people who have recovered from ME/CFS. Spreading hope and understanding based on their stories.
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[Martin Kulldorff @MartinKulldorff]

"Long-Covid" equally common among young people who did and did not have Covid (RR=1.06, (95%CI 0.83-1.37). More likely caused by low physical activity and loneliness.
Study by @jp_selvakumar et al.
https://t.co/JT4sCNCMk5

[ME/CFS Research @cfs_research]

@jp_selvakumar @GidMK Anyway, I think people should take this study for what it is, rather than simply looking for flaws. It's a good study, and tells us more about longcovid. It doesn't "minimise it". If anything it tells us that this is a bigger issue than covid, as 50% of non-infected people suffer

[Paul Garner @PaulGarnerWoof]

"One mediator of this variability between symptoms
and disease is the patient’s thoughts, beliefs, and
ideas. These cognitions can amplify symptoms and
bodily distress". Barsky, JAMA. Relevant to #LongCovid and catastrophic thought

[Paul Garner @PaulGarnerWoof]

#longcovid permanent damage probably overblown. Excellent analysis by @ManvBrain. Uses studies with proper controls. Catastrophic stories selectively reported by press and medical journals can cause rumination and delay recovery
https://t.co/DmrYvrttOP

[Fiona @Fionas_Story]

It's a very complex journey to go on, to choose to speak up about recovering. 😑

But there are lots of us who have recovered and lots of people are also grateful to hear about the path to recovery

[Paul Garner @PaulGarnerWoof]

High anger partisans believe claims supportive of their party regardless of their veracity; and avoid counter attitudinal sources. Highly relevant to the polarisation in #MECFS and #longcovid https://t.co/kywPfREgwc

[Paul Garner @PaulGarnerWoof]

“some Long Covid is likely driven by psychosocial factors…” Excellent response @nataliesurely. An adult in the room. Denying removes helpful treatments

[Alan Carson @AlanCarson15]

The notion of an essay on Functional Neurological Disorders winning a @Brain1878 essay prize was unimaginable when i started in a then obscure field of research 28 years ago- we ve come a long way- congratulations to @popkirov but also @MasudHusain for editorial leadership

[NIHR Biomedical Research Centre (BRC): Maudsley @NIHRMaudsleyBRC]

From migraines to IBS... #stress can impact our physical health in many ways.

In The Guardian, our BRC Theme Leads Prof @PeterGoadsby and Prof @RonaMossMorris discuss medications and digital therapies that can help, and the research behind them: https://t.co/bSC9IJMuUZ

[Cameron Watson @Camer0nWatson]

I am once again seeing the agonising conflation of “functional” and “psychological” as equalling “not real”, and seemingly when it comes to medical professionals, not worth treating.

FWIW, the only boundary between mind and matter is the one society chooses to make.

[MY CFS TRUTH @SanjeevFilm]

Say it LOUDER! For those in the back!

[Egil Fors @egilfors]

@RecoveryNor Placebo generates substantial biological substrates, e.g. opioids and dopamine in pain and parkinsonism, respectively, as well as CCK in nocebo-reactions

[Recovery @RecoveryNor]

Yes, the huge effect of placebo in the rituximab trial was underreported, and the researchers behind the study haven't highlighted it at all. Placebo does not mean "not real", it means a significant effect from the non-specifics of having hope, a strategy, expecting improvement.

[ME/CFS Research @cfs_research]

@Fionas_Story @Retlouping I find it fascinating that the rituximab trial resulted in 38% long-term remission from a treatment that was shown to be no better than placebo. It's also interesting that that virtually nobody has any interest in that finding.

[Fiona @Fionas_Story]

The only new year's resolution I ever really make these days is to make as much as I can of having such good health now. I am so excited about going snow-shoeing in Finland in January, in particular. How lucky am I? I hope it's the first of many adventures this year

[The Times and Sunday Times @thetimes]

Francesca Steele had given up hope. Then she tried an alternative health treatment

[Fiona @Fionas_Story]

@chronicnotebook Thanks to improved pain science, all of these symptoms can now be reduced in many people - that just isn't very well known

[Fiona @Fionas_Story]

@cfs_research @DafoeWhitney Thank you for tagging me.I met the ICC- I had PEM and many other symptoms as well as POTS and am in touch with many who were in the same boat who have also recovered

[Recovery @RecoveryNor]

@DafoeWhitney @cfs_research Here is Thomas, for example, Whitney, who had very severe #MECFS.
https://t.co/EqqeZaP32m
Here is Jan Even..
https://t.co/DvTVMbpagw
Here is Bjørne-.
https://t.co/ztDfSjfNbr
They all would have found getting this tweet really provocative.
They all recovered.

[Recovery @RecoveryNor]

@DafoeWhitney @cfs_research Here is Thomas, for example, Whitney, who had very severe #MECFS.
https://t.co/EqqeZb664m
Here is Jan Even..
https://t.co/DvTVMbGdiw
Here is Bjørne-.
https://t.co/ztDfSiXDXj
They all would have found getting this tweet really provocative.
They all recovered.

[ME/CFS Research @cfs_research]

@DafoeWhitney Many of us have recovered, and had more than just "fatigue". I had PEM, POTS, extreme gastroparesis, and many other extremely disabling symptoms.