DecodeME in the media

Andy said:
I think a distinction needs to be made here between patients speaking to their own experience, which may well include being told that there is nothing wrong with them and it's all in the head, and advocates who are trying to speak on behalf of the community. The first should be allowed to tell their own story, while the second should indeed move beyond that narrative and on to practicalities on what is needed and what needs to change.
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Really well put. I hadn’t made that distinction in my own head but it’s really important.
 
Maat said:
@bobbler managed to find it. I could only find the first half hour of the 11pm of the extended press review which covered Ukraine and Gaza, on the Sky press review on their YouTube channel.

She transcribed from what she found online.
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It disappeared on me when I checked back to it so I don’t have it anymore. So if anyone else has a copy it’s still needed.
 
hotblack said:
This seems pretty fair and well edited. The way they have pieced this together is quite entertaining with some selective quoting used to skip the more questionable claims by certain people…
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Yes. The way they took Carson was very well done.

Neuropsychiatrist Alan Carson from the University of Edinburgh, who was not involved in the study, says it is "by someway the largest study ever conducted on genetics of CFS/ME."

DecodeME's analysis brought together more than 16,000 patients, most of whom are female and of European descent. The criteria for diagnosis was stringent so that only the most clear-cut cases were included.
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Has anyone posted from the Times today, print copy p 17
" Leading scientist blames medical misogyny for lack of ME research"

https://www.thetimes.com/uk/scotland/article/chris-ponting-misogyny-me-research-c09hp0hfg ( online copy)

Please delete if already posted. I'm not able to read today - crashed.

I'm sure Chris will know about the history of our illness but it will need addressing in the right way so not straightforward.

edit: posted for information. Unable to continue discussion.
 
rvallee said:
many governments, and especially the UK's, are loudly whining about the high costs of disabled people not being able to work, the only reason why is because THEY didn't do THEIR job. So now they need to do their job so we can regain fulfilling lives.
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I have started pointing this out to my MP and included it in my consultation response to the Pathways to Work Green Paper;

If it is our moral duty as citizens to work if we can, surely it is the government's moral duty to undertake research and provide suitable treatments to enable us to work, and make accessible, suitable jobs available?

IMO we need to keep saying this once and over as loudly as possible.

I can't do any job because you haven't done yours.
 
Agree. It’s a point I’ve repeatedly made. I had a good job, now I can’t do it. If there is a moral duty to get people back into work there’s a moral duty to invest in treatments so they can and in adequate care and support until those treatments are available.
 
More low-mid tier coverage in Francophone media. Looks like it won’t make it to the big news outlets like it did in UK.

issues.fr

Différences génétiques clés trouvées chez les personnes atteintes du syndrome de fatigue chronique

Les personnes atteintes du syndrome de fatigue chronique, également connue sous le nom d'encéphalomyélite myalgique, semblent avoir huit signaux
issues.fr issues.fr

www.passeportsante.net

Huit zones du génome associées au syndrome de fatigue chronique

Une étude génétique massive identifie huit zones clés liées au syndrome de fatigue chronique. Un tournant pour la recherche. #sante #genetique
www.passeportsante.net www.passeportsante.net
 
The only article I could find in German media.


Martin Ruecker, who normally writes good articles about ME/CFS in Riffreporter, did not like the Times article because it uses words such as "hope" and "breakthrough". Based on his tweets I think he may write about DecodeME once it has been peer-reviewed.

This may not be a bad thing because he has recently published an awful interview with the head of the German society of neurologists (DGN) and didn't bother to challenge their BPS views. Riffreporter strikes me as an irrelevant online newspaper, but he's also written about DGN in one of the largest German mainstream newspapers. The article is behind a paywall, but it picks up talking points from the interview and probably doesn't do us any favours.
 
OrganicChilli said:
The only article I could find in German media.


Martin Ruecker, who normally writes good articles about ME/CFS in Riffreporter, did not like the Times article because it uses words such as "hope" and "breakthrough". Based on his tweets I think he may write about DecodeME once it has been peer-reviewed.

This may not be a bad thing because he has recently published an awful interview with the head of the German society of neurologists (DGN) and didn't bother to challenge their BPS views. Riffreporter strikes me as an irrelevant online newspaper, but he's also written about DGN in one of the largest German mainstream newspapers. The article is behind a paywall, but it picks up talking points from the interview and probably doesn't do us any favours.
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I’m confused. I thought Rücker was like the best ally in german journalism. Him not challenging that awful DGN position statement is really suprising to me :(

Edit: oh yeah you’re right. Seems to have latched onto the idea of “multidisciplinary teams” without considering what that means from an organisation who constantly emphasises psychology.
 
The
Yann04 said:
I’m confused. I thought Rücker was like the best ally in german journalism. Him not challenging that awful DGN position statement is really suprising to me
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Yes, same here. He justified it with viewpoint neutrality. The headline is "ME/CFS is not entirely psychosomatic".

The head of the DGN then suggests patients should receive home visits from "multidisciplinary teams" including psychologists to rule out depression :rolleyes:
 
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