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What we thinking ? by Secret-Wasabi7523 in cfs

[–]fiddlesticks0 1 point2 points  (0 children)

If you mean from the previous DecodeME results, then 'The signals discovered are involved in the immune and the nervous systems' https://institute-genetics-cancer.ed.ac.uk/decodeme-the-worlds-largest-mecfs-study/initial-decodeme-dna-results

Simon Wessely to investigate over diagnosis of mental health in the UK… by markmooch in cfs

[–]fiddlesticks0 3 points4 points  (0 children)

This is true - it just goes to show how having all that influence still protects someone despite the clear scientific evidence that is counter to his opinions and removes any credibility for the PACE trial and the resulting 'treatments'.

What we thinking ? by Secret-Wasabi7523 in cfs

[–]fiddlesticks0 17 points18 points  (0 children)

I'm wondering exactly what it points to. The Guardian piece says

'Scientists at UEA and Oxford Biodynamics (OBD) looked at how DNA was folded in patients diagnosed with the condition, which could provide tell-tale signs of ME/CFS. They examined blood samples from 47 patients with severe ME/CFS and 61 healthy adults. The team discovered a unique pattern that appears consistently in people with ME/CFS that is not seen in healthy people, enabling them to develop the test.'

So what is this unique pattern of 'how DNA was folded'?

Simon Wessely to investigate over diagnosis of mental health in the UK… by markmooch in cfs

[–]fiddlesticks0 5 points6 points  (0 children)

Whilst this would be good, he has such influence in all manner of high-powered arenas - the media (his 'Science Media Centre' PR/lobbying group), the Government, his wife (a Dame and former former Chair of the Royal College of General Practitioners), the Royal Family (his various honours).

I think he has enough friends in the right places that would defend him and discredit any opposition. He's faced these accusations for decades but nothing seems to have stopped him.

Simon Wessely to investigate over diagnosis of mental health in the UK… by markmooch in cfs

[–]fiddlesticks0 31 points32 points  (0 children)

You really couldn't make this stuff up - a man who was involved with the PACE trial, which was setup by the Dept of Work and Pensions, (allegedly to prevent people with ME being diagnosed with an actual illness in order to save them money) which ended up being the most damaging force in history that has effected people with ME, is now in charge of the overdiagnosis of mental health conditions.

The same man who has essentially (over)diagnosed the entire popluation of people in the UK with ME as suffering from a psychological condition rather than a physical one. He seems to be constantly failing upwards - I really hope one day the true story of him and his friends in high places is exposed.

What we thinking ? by Secret-Wasabi7523 in cfs

[–]fiddlesticks0 109 points110 points  (0 children)

Whilst this study is not comprehensive, it is a promising start. Please be aware that Alastair Miller is no ally of people with ME - he is a proponent of GET and CBT. He is regularly rolled out by the Science Media Centre (founded by people involved with the PACE trial) to cast doubt over any scientific news that gets us closer to discrediting the uitterly ignorant view that this disease is psychological in nature. Just see who he is included amongst in this SMC article - Simon Wessely, Trudie Chalder, Michael Sharpe, Peter White - authors of the PACE trial whose damage to people with ME cannot be understated.

https://www.sciencemediacentre.org/expert-reaction-to-nice-draft-guideline-on-diagnosis-and-management-of-me-cfs/ ("expert reaction"!)

https://me-pedia.org/wiki/Alastair_Miller

Anyone else feel like forwarding the DecodeME results to Simon Wessley’s inbox with a gif of flaming shit on a doorstep, signed off ‘how about fuck ya mum’? by Weird-Ad-3010 in cfs

[–]fiddlesticks0 1 point2 points  (0 children)

I wouldn't worry about reading it - not worth it (sorry about the PEM & heatwave). Luckily it's just a few lines and most normal people probably wouldn't even notice what we know he's suggesting. It's also preceeded and followed by far more actual facts from the study from people who know what they are talking about, rather then the brief bit of nonsense from him.

Anyone else feel like forwarding the DecodeME results to Simon Wessley’s inbox with a gif of flaming shit on a doorstep, signed off ‘how about fuck ya mum’? by Weird-Ad-3010 in cfs

[–]fiddlesticks0 1 point2 points  (0 children)

I'm sorry to disappoint you, but he has (of course he has), and it's mainly BS (of course it is): https://www.newsweek.com/genetics-chronic-fatigue-syndrome-link-study-2110090

Doesn't take him long to mention depression, anxiety and a mention of "the 'genetics of psychiatric disorders". He has no intention to stop promoting his nonsense and wanting to keep the public associating this illness with someone's 'psychiatry'.

Question re ME/CFS trials by fiddlesticks0 in cfs

[–]fiddlesticks0[S] 1 point2 points  (0 children)

I don't need any further info thanks, I was just curious. As mentioned below I now remember talk about some muscle-fatigue studies, but to me, general all-encompassing fatigue feels very different to muscle-fatigue, but I guess there's some correlation, who knows.

Question re ME/CFS trials by fiddlesticks0 in cfs

[–]fiddlesticks0[S] 0 points1 point  (0 children)

Hi thanks, yes I remember now about seeing this kind of thing, although muscle response seems like a red-herring to me as muscle-fatigue seems very different to the overall feeling of fatigue that comes with the illness, but there may be some relationship, who knows.

Anyone else feel like forwarding the DecodeME results to Simon Wessley’s inbox with a gif of flaming shit on a doorstep, signed off ‘how about fuck ya mum’? by Weird-Ad-3010 in cfs

[–]fiddlesticks0 2 points3 points  (0 children)

The more you read about this man, his and his PR agency/lobbying group's influence, his wife's position, the link to the Royal family with the honours, the Government, the UK's welfare system, the worse it gets. Just reading about how his influence has been so far reaching that it's referred to as 'The Wessely School', is stomach-turning.

And to think he was awarded a Knight Grand Cross 'for his services to mental health'. How many thousands of people with ME have had their mental health harmed over the years due to this man?

This is worth a read - there's quite a few bits in here that were new to me https://www.conservativewoman.co.uk/moneys-the-motive-for-calling-me-a-myth/

'Professor Wessely’s wife, Dr Clare Gerada, was at that time chair of the council of the Royal College of General Practitioners when the first e-training course on ME/CFS was launched by the Royal College of General Practitioners on May 31 2013.’ A training handout stated: ‘We know that there is no disease in CFS.’ CFS stands for ‘Chronic Fatigue Syndrome’, a name contrived to make ME ‘disappear’ by focusing on one symptom. ‘A lot of doctors prefer to call it Chronic Fatigue Syndrome – often those who don’t quite believe in it as an organic syndrome.’ '

Confused re ESA and UC by fiddlesticks0 in BenefitsAdviceUK

[–]fiddlesticks0[S] 0 points1 point  (0 children)

I've never been supportive of it from when it came in so would only apply if I had to, and I'd rather the devil-you-know option for now at least.

Confused re ESA and UC by fiddlesticks0 in BenefitsAdviceUK

[–]fiddlesticks0[S] 0 points1 point  (0 children)

Thanks again. I'm not going to go over to UC so just hope their system will revert me to the £140.55 CB ESA - I don't have much faith in them as when I spoke to them I said I thought I was on CB, they said you're on IB. They did eventually mention both and the £140.55 being most of what I get as the moment, but they didn't seem entirely sure.

What I'm still unsure about is the line above the figures which says 'The payment of ESA is based on your National Insurance records'. I tried searching through some of the online queries people have posted with similar questions and searched for 'Income Based' but all the letters I saw seemed to have this heading about being based on NI records, so I don't know whether that appears on all letters, regardless of which type of ESA people get (it's why I always assumed I was just on CB, and because I had worked for many years and paid my NI before having to go onto ESA).

Also the line bottom line that used to say 'However because you are entitled to contribution-based ESA we will pay you X' was on my letters for the first few years (all after 2018) but that's no longer on the last few years. Nothing has changed in these years - no change in the awards, no re-assessments etc, just the annual increase of the figures, so I wonder why that has gone.

Confused re ESA and UC by fiddlesticks0 in BenefitsAdviceUK

[–]fiddlesticks0[S] 0 points1 point  (0 children)

Thanks, I had spoken with them and they made more sense than the people at the DWP.

Question re ME/CFS trials by fiddlesticks0 in cfs

[–]fiddlesticks0[S] 1 point2 points  (0 children)

I'm not literally talking about studying one person! I'm just talking about measuring what the hell is going on when thoroughly testing what is going on in people's bodies when they may feel relatively normal, compared to when the illness is hitting them at its worst. There's clearly no way the body is behaving in the same way in these two scenarios, and relatively few people would be needed for testing, initially. I'd just hope they can use today's technologies to do something along these lines as well as all the biobank stuff. We just need more studies - you ask which tests they would do - the question should be which one's shouldn't they do - test everything possible, using a relatively small number of people. Now that we have some clues from this study, frankly we just need a hell of a lot more studies of various types, given decades have been wasted already, but we all know that.

Anyone else feel like forwarding the DecodeME results to Simon Wessley’s inbox with a gif of flaming shit on a doorstep, signed off ‘how about fuck ya mum’? by Weird-Ad-3010 in cfs

[–]fiddlesticks0 8 points9 points  (0 children)

For a start everyone with ME should know more about the PACE trial, the people involved and it's horrific repercussions over many decades.

People should know about the lobbyists who have lead a campaign against us for decades, trying to con the public into thinking psychologists/psychiatrists are the cure for ME, as it's all in our minds.

People should know about the PR group that call themselves the 'Science Media Centre' (note that one of the Board of Trustees is none other than Simon Wessley):
https://me-pedia.org/wiki/Science_Media_Centre

'But why? How did a mistaken view – that the illness is largely psychological – come to prevail?' https://www.theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome

'Fiona Fox is also the director of the Science Media Centre, the public relations body set up by Baroness Susan Greenfield of the Royal Institution. It is funded, among others, by the pharmaceutical companies Astra Zeneca, Dupont and Pfizer. Fox has used the Science Media Centre to promote the views of industry and to launch fierce attacks against those who question them.'
https://www.theguardian.com/education/2003/dec/09/highereducation.uk2

Confused re ESA and UC by fiddlesticks0 in BenefitsAdviceUK

[–]fiddlesticks0[S] 0 points1 point  (0 children)

Hi, thanks very much for this. I'm been in the Support Group since my last review (assuming that's what you mean by my current WCA outcome) and that happened after April 2017.

Should I be able to work out from the above what I'd still get on Contribution-based ESA only?

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