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Recovery

@RecoveryNor

Organization consisting of people who have recovered from ME/CFS. Spreading hope and understanding based on their stories. Facebook: https://t.co/rbBGUQZ8ur

Oslo, Norway Entrou em Eylül 2017
69 Seguindo213 Seguidores
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ME/CFS Research
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
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Paul Garner
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
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Paul Garner
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 tinyurl.com/28panmpp
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Fiona
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
MY CFS TRUTH@SanjeevFilm

Another story of someone recovering from ME/CFS that naysayers will say 'she didn't actually have it' or 'She's lying!'. Recoveries do happen, I am one of them, and so is this brave woman who told her story. If you're reading this you can get better too. youtube.com/watch?v=JRPynG…

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Paul Garner
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 doi.org/10.1093/joc/jq…
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Paul Garner
Paul Garner@PaulGarnerWoof·
“some Long Covid is likely driven by psychosocial factors…” Excellent response @nataliesurely. An adult in the room. Denying removes helpful treatments
Natalie Shure@nataliesurely

I wrote a reported essay for The New Republic last month about Functional Neurological Disorder, Long Covid, and the role of psychosocial factors as drivers of illness. The piece received criticism, which I've responded to here: @nataliesurely/addressing-the-response-to-my-long-covid-essay-31122054255d" target="_blank" rel="nofollow noopener">medium.com/@nataliesurely

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Alan Carson
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
Masud Husain@MasudHusain

January issue of @Brain1878 now out academic.oup.com/brain/issue/14… with 'Double Vision', the winning contribution in our Essay Competition by @popkirov academic.oup.com/brain/article/…

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Cameron Watson
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.
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Egil Fors
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
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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.

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Fiona
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
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The Times and The Sunday Times
Francesca Steele had given up hope. Then she tried an alternative health treatment
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Fiona
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
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Fiona
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
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Whitney Dafoe
Whitney Dafoe@DafoeWhitney·
@cfs_research @KaloNuman I’m talking about all the recovery stories from people who just had “fatigue”. I’m not taking about people with very clear ME/CFS diagnoses. There are very few recovery stories from people with a clear ME/CFS diagnosis. But I don’t presume to know your case or the cause. :)
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Whitney Dafoe
Whitney Dafoe@DafoeWhitney·
I can’t wait for the day there is a diagnostic test and we stop having to listen to "recovery stories" from people who had "fatigue".
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ME/CFS Research
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.
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