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.
 
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)
 
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.
 
LBC phone-in show hosted by Natasha Devon from yesterday.


AI transcript:
This is a transcript of the LBC phone-in show hosted by Natasha Devon, discussing the results of the DecodeME genetic study on Myalgic Encephalomyelitis (ME).


**Natasha Devon:** But first, the largest study of its kind has found that there is a genetic element to ME. Scientists have responded by saying this will put me on an equal footing with other debilitating diseases and also open up other potential treatment options. I want to know if you have been told that your ME isn't real, that it's in your head, and if so, what you make of these findings.


If you are a regular listener to this show, you'll know that we've hosted a number of phone-ins in the past about ME and it's something that I keep an eye on. One of my heroes, George Monbiot, writes about it a lot, about how that there is what he describes as a scandal behind the way that people with ME have been gaslit about their condition, told that it's all in their minds, told that it can be solved with exercise, none of which is scientifically robust.


And this week, the results of the world's largest study into ME were published. It was conducted by the University of Edinburgh and involved testing 27,000 people with a diagnosis of ME and 250,000 people who did not. And what it found was that there were eight regions of genomes substantially different in those who have ME and those who do not. So what that means is that there is a genetic causation. There is a genetic link to ME and that's really significant.


Sonia Chowdhury, who's the chief executive of Action for ME, says people have been disbelieved even by doctors and told that the condition is not real. And scientists have responded to these findings by saying it's going to put ME on an equal footing with other debilitating diseases and also open up other potential treatment options. So this is huge. An investigator for the study, DecodeME, described it as a moment of change for the population and a wakeup call.


I thought I would take the opportunity to ask you this hour what this means to you. If you are somebody with a diagnosis of ME or perhaps a diagnosis of Long COVID, which are not exactly the same but there are similarities, and you feel that you have been gaslit or you have had people in your life that have told you that your condition doesn't exist. We have a study now that shows that it absolutely does. It's measurable. It's tangible. How does that feel for you?


We're joined now by Sarah Boothby who's a campaigner on ME and chronic fatigue. Thank you so much for joining us this evening. Sarah, first of all, would you mind telling us how you came to be a campaigner on this issue?


**Sarah Boothby:** That's a great question, Natasha, because I honestly did not think of myself as a campaigner. It's kind of I've been pushed into it because I'm not somebody who, firstly injustice has always motivated me to act anyway. And secondly, having seen what I've seen so close and so personal, I can't just ignore it now. You know, my daughter died from medical neglect of ME and I'm a qualified social worker, so I know that the laws in our country are designed to protect patients like Maeve.


With ME, it does not work. It does not work. For me, that is a perfect example of what injustice looks like. Here we are a free speech country and we create all of these laws. We vote for people who create these laws for us and then suddenly if you've got a diagnosis of ME or chronic fatigue syndrome, they don't work for you. I want an explanation, please. So that's how I became a campaigner.


**Natasha Devon:** When you say that that the system is just not fit for purpose and it doesn't acknowledge people with a diagnosis of ME or chronic fatigue syndrome, what do you mean by that? What is not there that should be there to support them?


**Sarah Boothby:** I think the root of this is that ME is not chronic fatigue syndrome. It never was. And to confuse the two is a disservice to both sets of patients. Chronic fatigue syndrome is a term that was invented by psychiatry to give itself a kind of legitimacy that it doesn't have now. ME was a condition already in existence. It's only because patients speak up for themselves that there's any kind of recognition because there's never been research done into it as a biomedical condition, which is why it's an exciting time.


But it's a pre-print, so I'm expecting the people who have to defend themselves with chronic fatigue syndrome will be pushing back on this. That's not such a bad thing. It's how good science works and it's how good laws are made. But when people are dying and those people take no responsibility for those deaths and pretend they're not actually happening, and the entire British medical establishment is implicated in this, then there's something really rotten at the heart of it.


**Natasha Devon:** When you say that ME and chronic fatigue syndrome are not the same thing, can you clarify that a bit? Are we saying that they are distinct conditions, one of which is psychological and the other one is neurological?


**Sarah Boothby:** No. And it's difficult to define because there is no biomarker for either condition. But I worked for a long time in specialist mental health services and I saw a lot of people who had severe and enduring mental health conditions. Many of them had CFS in the long list of diagnoses. Those patients deserve as much of a service as anybody else.


The defining characteristic of ME is something called post-exertional malaise.


**Natasha Devon:** I would say that it would be taking a really long time to recover after doing exercise or exerting yourself.


**Sarah Boothby:** Okay. And when you think of exertion, what would you include in that?


**Natasha Devon:** I would say maybe going to the gym or going for a run.


**Sarah Boothby:** Fantastic. People with ME, if they do that, which is what everybody knows is good to keep you healthy, they will make themselves more unwell. And nobody knows but them what that's actually like. There's something like 200 different symptoms in ME. From the point of view of the GP, you've got this person coming in saying, "Every time I go to the gym, I feel X, Y, or Zed." And the GP is going, "I keep seeing this person... they look perfectly okay to me." Maybe they've got hypochondria. There's no biomarker. There's no test.


Until we get the biomarker that demonstrates PEM is real... and in the early stages of ME when it's mild, there can be quite a long delay between the activity and the symptom onset. With Maeve, my own daughter, she had a mild infection at 12. By 13, she was writing in her diary about feeling tired all the time. By 26, she was unable to move a muscle. Everything had to be done for her. She couldn't sit up, she couldn't chew. I was caring for her completely single-handed 24 hours a day, even when she was in hospital because the nurses did not have the time to feed her. The doctors didn't know what was wrong. For them, the risk of tube feeding her was higher than the risk of allowing her to starve to death, which is absolutely staggering.


**Natasha Devon:** This text has come in from Daisy on 84850 who said, "I grew up with a mom with ME and I was diagnosed two years ago and I can tell you that ME patients have known this for years. It's so validating to have science-backed evidence at last and I'm so grateful to DecodeME. Unfortunately, I'm sure the stigma will be around for a while yet."


Let's go to the calls. Fran has called from Sheffield.


**Fran:** Hi, I'm just calling as a person with severe ME, as someone who actually can call. I was very severe for a year so I was unable to talk, stand, move at all and I've improved a little bit. So I guess I'm calling on behalf of everyone who can't do that.


**Natasha Devon:** What is it that you wish that people knew or you feel that is misunderstood?


**Fran:** So much is misunderstood about this disease. Very much the fact that it is a completely biological, pathophysiological illness. It isn't psychosomatic in any way. The harder you try, the worse you get, which feels so different to any other disease. And your mindset won't cure you. You can't think your way out of it.


**Natasha Devon:** I wonder how have your friends and family dealt with your diagnosis?


**Fran:** Overall I've been pretty lucky but I have still had people close to me who've often gone down internet rabbit holes, you know, suggest, "Oh, you know, it is a mind-body disease. You can do this course that's going to fix you by retraining your brain," which is just not going to fix a biological illness. I even had people saying that to me when I was flat in bed, couldn't sit up, could barely roll over, couldn't even open my eyes for months on end. Saying to that person, "You can just think your way out of it," seems ludicrous.


**Natasha Devon:** Thank you so much for your call. Cherylyn has called from Red Hill.


**Cherylyn:** Hello. I've had this since I was 17, although it wasn't diagnosed till my 30s when I suffered a complete collapse and ended up in a wheelchair. Going through the medical services has been absolutely galling, really frustrating, lots and lots of gaslighting. I'm in my 50s now. I've missed a lot of life. Everything I've done has ended with a collapse, a sort of burnout. And it seems that the only things that are on offer in the specialist ME clinics are pacing and cognitive behavioral therapy, and that's treating it as if it's a mental condition.


**Natasha Devon:** This anonymous text on 84850 says, "I took part in this research and would love to call in, but I keep my ME a secret. The main reason for this... is there's no test for it. This obviously leaves it open to doubt and judgment from those who think if you look okay then you are okay. These findings give me hope. Firstly that a test can be developed to prove the illness but mostly the hope that one day a treatment can be found."


Sue has called from Devon.


**Sue:** This is like really, really important because I'm heading towards 60 and I've had quite a lifetime of this. It started with feeling tired all the time. I was told, "Do more." So I kept doing more. I became really ill. I was running marathons, surfing, cycling long distance. I ran my own business, was a health care professional, bringing up a family, attending university, all at the same time because I was told, "Just keep doing more." Eventually, I became so ill. My GP said to me, "It's behavior. You choose to behave like this. You're lazy and you have depression." I became so ill, I was sleeping 24/7.


**Natasha Devon:** Rowan has called from the Isle of Man.


**Rowan:** Yeah. Hi. I've got something called chronic Lyme disease. I got a tick in Richmond Park in 2010. I do get ME and before that, I was a disbeliever. I now know from my experience that I think viral or bacterial infections can affect your whole body. And until you have ME, you just can't believe the effect it has on you. You just crash and it's quite profound.


**Natasha Devon:** Chloe has called from Bradford.


**Chloe:** Hi Natasha. I think there is a little bit of excitement for me personally where you do feel finally there's some recognition and you do feel that obviously you're justified in explaining to people there's something wrong. My big fear is it's a big load of nothing and it will end up without the funding it needs, without the research it needs, without the support being piled into it to make sure that we can use that information to find treatments, to find cures. It is a good moment, but it can't stop here.


**Natasha Devon:** Thank you so much for your call and that's a really good point to make that this needs to be the starting point for further action. A text from Trudy says, "I've been diagnosed with long COVID and ME. I've been treated like I'm a liar and making it up as I don't look ill but constantly struggle every day. This new diagnosis is such great news and a relief." Another text says, "I have severe ME, but set an alarm to wake me up at 2 a.m. so I could listen to this segment live from Western Australia. I wanted to emphasize that DecodeME is bringing much-needed hope to ME sufferers, not just in the UK, but worldwide." Thank you so much for all of your contributions. As I say, we will return to this topic.
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(AI transcript above hasn't got Sarah's name quite right: "Booby" -> "Boothby")

Sue's story at 28:50 is incredible. Healthcare professional, marathon runner, surfer, cyclist, ran her own business, mother etc. Was told to do more and more. Worsened and was told it was behavioural, that she was lazy and depressed. Was told she was abused as a child. She denied any such thing, supported by family and friends, but was still told it was because she had blocked it out. Developed seizures with serotonin syndrome due to inappropriate SSRI prescription. Also told she was a difficult patient because she was a healthcare professional. Within the past year she goes to A&E for an unrelated issue and the doctor has "never heard of ME".
 
I remember being sent to hospital by one dr only to be sent away after an awful overnight ‘stay’ because ‘there was nothing wrong with me’ as the senior dr there said in their assessment ‘maybe you had a migraine’. Despite the fact I had to be taken there in an ambulance and couldn’t walk out of the place. ‘Oh you’re still here’ were the words of one person as I explained I had to get someone to come and take me home.

I was in hell for months after and never fully recovered from what they put me through. It was the final straw which broke my trust and means I will never trust a hospital until they do something to gain that trust back. I’ve tried to work with them but you just can’t when they won’t recognise our needs or that they have to work to regain trust rather than continue to assume they know best and we’re at fault.
 
SNT Gatchaman said:
(AI transcript above hasn't got Sarah's name quite right: "Booby" -> "Boothby")

Sue's story at 28:50 is incredible. Healthcare professional, marathon runner, surfer, cyclist, ran her own business, mother etc. Was told to do more and more. Worsened and was told it was behavioural, that she was lazy and depressed. Was told she was abused as a child. She denied any such thing, supported by family and friends, but was still told it was because she had blocked it out. Developed seizures with serotonin syndrome due to inappropriate SSRI prescription. Also told she was a difficult patient because she was a healthcare professional. Within the past year she goes to A&E for an unrelated issue and the doctor has "never heard of ME".
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I was admitted to hospital for an unrelated issue during the pandemic and a doctor taking my history said "what's that?" in response to me saying I had ME/CFS
 
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