DecodeME in the media

JellyBabyKid said:
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.
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We need to be so careful with this because at the moment what we are doing thinking it’s this is allowing the emphasis to be in the wrong place on not thought through to the end enough so is just repeating the PACE rehab trap.

What we might talk is one thing but what is being said misses the bit needing focus - how ill we are, what is needed, that other big conditions get right

And is doing a rush job in the work bit which might as well be being said by bps themselves for the actual wording (not he intentions, or what we hoped people would hear) being said and how that is used.

I know some think saying it any old how gets across some ‘winning point’ but that point has been twisted(to be said in the exact form we are often having advocates saying it ) to what is actually being said is wrongly suggesting most don’t work and the issue is we are being made to. Or need support for that. When most do work so that stigmatizing ourselves either an untruth. And the issue there is adjustments.

But yes we want research so we stop getting nonsense ‘non medical care’ because (most don’t know this because we don’t get the message that it has never been looked into even in basic form) isn’t hel for anyone.

Which isn’t the focus on message of ‘what’s wrong with us’ , what we need as a priority, how this can effect different ranges. Which isn’t again what the other big conditions get correct.


I don’t think unless we think more precisely that one line moves anything on.

It’s fine as a ‘retort’ but only if we’ve interrogated so the exact words are solid. But we are repeating the last twenty years I think if we are thinking this as a loose one-liner is a winner. Sorry. Everyone is happy because we’ve not spent time focusing on the bit of the message that needed emphasizing (just the work but) so politicians act sympathetic and give people a work coach and a supposed stick/carrot and according to them parsing our words then their problem is fixed faster than having to wait on all this supposed long term research- cos that’ll help in the interim (just happens to be the old pace stuff).

People really don’t get why what’s been offered was abusive and not support btw. They don’t get that just because they’ve a mild cfs colleague who seems ok giving advice based on that to someone severe as if they are the same is wrong headed on assumptions because they don’t know it’s either permanent as an issue or how bad it is behind the performance but they see or the fatigue mid-sell they assume it is.

So of all we add is what’s on their mind and in the news (not because of us ) of stats of unemployment- and we hand the govt the idea they can pretend the 1.3m unemployed is mostly me people not working firstly it’s wrong - because most of us work until we get so ill they never see us in public again and secondly we will get absolutely targeted by ‘back to work’ headlines instead of ‘wonderful discovery giving people back their lives’ because we ourselves have shifted the message.

I’m exhausted and can’t put it as well as I need to but I just beg this one-liner some think is a great idea but is not at all been made precisely or faked out enough to stop thinking it’s the be all and end all line when it feels like the worst strategy or one to send us as if we are asking for what we’ve had for the last 20yrs. We will just get another innovative, branded ‘get pwme working’ programme about mindset and motivation. Because we aren’t the audience and the audience don’t care if we are cured because they don’t think what we have is that bad and saying (before they know some are that bad) things that misrepresent us as not working when the issues been us all working too hard until that damage is irreparable to our independence just ups stigma and the sales pitch of bps.

And we are branding ourselves yet again as me = people who don’t work. When the issue is that role don’t understand it’s the opposite and don’t understand the spectrum of the illness because we don’t use our time to unbundle that well like eg MS charities to (other than one liner of people in dark rooms). It’s all drama without content and drama that doesn’t land because people don’t have empathy for us - most don’t hear dark rooms and get what we hope they do. They think of migraine or why are they there and we never expand on why they see some out in public and apparently then talk of this.

This is our chance to finally start getting some decent content down. To get the mental pictures and main messaging down. And stop thinking we can pull the one-liners that only would work if we were talking to friendlies who already got the magnitude of the illness and actually lack of any medical care. We keep forgetting people assume there must be something there. It’s just not ideal.

All these things we need to correct and get people to know and we focus on the one liner they do always know which is that if people were cured they’d be more productive. But we don’t even focus on the issue being pushing people who are broken doesn’t work if you don’t fix their bodies. We haven’t even nailed that message beyond the ‘walk in a broken leg’ bit.

Lots of work to do.

But hopefully this new stuff gives us an opportunity to modernize and take things to a better and more precise level now on what we say and how prepared for all the connotations it is. And to have plans that think through ten layered steps of building up knowledge and messages we need others to get rather than just the one we assume will land - but doesn’t and gets heard very differently because of the bit we forget they haven’t had their assumptions changed on yet.
 
Wyva said:
The news of Decode ME has reached Hungary too, although so far I have seen only one such article. Portfolio is the largest business/economic news site in the country. They wrote their article based on the one in the Financial Times but they don't really go into details about the study too much. They emphasize that ME/CFS has been stigmatized and neglected and Decode ME may finally help take the disease more seriously. (They gave it a very stupid title though, although that was kind of expected.)

In Hungarian: https://www.portfolio.hu/gazdasag/2...-mostanaban-meglepo-felfedezest-tettek-778777

Google translated version
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There has been some additional coverage here too, although it has not been covered by every major news site, only a few.

Another one was Origo which is one of the top news sites but it is also infamous for featuring a lot of political propaganda, so I'm not sure I want to link the article here. They had a decent article about the Decode ME results though.

Another one was nlc.hu, which is a well-known women's magazine. This is a magazine that did an interview with me a few years ago and it was nice to see that in their current article about Decode ME, they shared details from that older interview with me, "a person suffering from the disease", to illustrate their point.

There have also been some mid-tier news sites that wrote about it (mostly based on the article in Portfolio, the business news site).

I have also seen that it was covered on Kárpátinfo, which is a Hungarian language news site for the Hungarian minority in Ukraine.

The articles themselves are what you can expect: often very stupid titles but OK-ish coverage with pointing out how ME/CFS has been mistreated for a very long time and that this is a turning point now probably.
 
Eleanor said:
Really good letter @Robert 1973

Andrew Millar: "Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed."

Funny how appropriate scepticism of scantily evidenced claims didn't prevent numerous behaviouralists' research getting funded...
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There literally where frontpage headlines after PACE, as scantily evidenced as it gets, about how it means that exercise and happy thoughts are the cure for chronic fatigue. We were literally the only people criticizing what were blatantly fraudulent assertions not backed by any evidence, and while the claims have continued, the evidence has only gotten weaker since, much of it revealed to be fraudulent.

Anyone who accepted those claims, especially those who still do today, have no credibility at all in arguing against shoddy evidence. But they still do, which means the reasons for their poor judgment are still in effect. They are basically the people who bet the farm, OUR FARM, on magical beans. About the only retort to them should take the form of a simple: sit down and shut up.
 
forestglip said:
Looking for articles in any major US news like CNN or New York Times, but still not seeing anything.

Here's a bunch of smaller newspapers around the world publishing about it using the same wire story: Google Search

Direct link to one: Sacramento Times
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Why do they all have the same logo? Or is that a google search thing. (I haven’t used google search in a while so excuse my confusion)
 
V.R.T. said:
In a sane world it would be the other way around. You would rule out ME/CFS if you suspected depression.
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Plus there is the loud and awkward fact that they, or anyone, cannot do that. If anyone, whether psychologists, psychiatrists or any other group of medical professionals could do that reliably, they already would have. The fact that they have not done that is all the proof that's needed that they cannot, as a matter of fact, do such a thing.

As an argument it's the same thing as requiring that any criminal investigation be first determined by the use of a psychic who will certify whether the accused did it, by reading their mind or whatever. Any psychic can do that as truly as any mental health professional can "rule out" depression in anyone, it's simply not a thing, a fake skill that no one has ever reliably applied.

What an absurd thing to argue still. No serious person would ever make such an argument, completely debunked as it is. All this controversy, the whole time, has been completely fake. It was always a bunch of people who had decided that all the evidence we had was not relevant, because all along the problem was this mystical creature named Glonzo doing cartoon-level shenanigans. You gotta keep looking for Glonzo with the patented Glonzo-detecting machine, which totally works as long as no one ever reliably assesses whether it does.
 
OrganicChilli said:
The


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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If the pt is highly distressed for whatever reason sure have a psychologist be part of the pts care, but there is no need, let alone enough psychologists, to be spending time 'ruling out depression' Serious nonsense.
 
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