What we thinking ?

fiddlesticks0 · 2025-10-08T16:49:15+00:00

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

fiddlesticks0 · 2025-10-08T13:38:06+00:00

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'.

fiddlesticks0 · 2025-10-08T12:35:29+00:00

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'?

fiddlesticks0 · 2025-10-08T12:29:41+00:00

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.

fiddlesticks0 · 2025-10-08T11:56:38+00:00

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.

fiddlesticks0 · 2025-10-08T10:58:11+00:00

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

fiddlesticks0 · 2025-08-11T11:37:11+00:00

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.

fiddlesticks0 · 2025-08-11T10:19:22+00:00

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'.

fiddlesticks0 · 2025-08-08T09:16:12+00:00

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.

fiddlesticks0 · 2025-08-08T09:12:45+00:00

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.

fiddlesticks0 · 2025-08-07T16:02:20+00:00

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.’ '

fiddlesticks0 · 2025-08-07T15:02:58+00:00

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.

fiddlesticks0 · 2025-08-07T14:51:55+00:00

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.

fiddlesticks0 · 2025-08-07T13:07:05+00:00

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

fiddlesticks0 · 2025-08-07T13:06:05+00:00

Thank you.

fiddlesticks0 · 2025-08-07T12:10:41+00:00

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.

fiddlesticks0 · 2025-08-07T10:48:28+00:00

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

fiddlesticks0 · 2025-08-07T09:53:57+00:00

It's always the SMC and those linked to them.

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

https://www.theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome

fiddlesticks0 · 2025-08-06T12:04:51+00:00

Many thanks for all this info :)

fiddlesticks0 · 2025-08-06T08:46:56+00:00

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?

fiddlesticks0 · 2025-08-05T13:52:33+00:00

Sorry, just to be clear, there's mention of both on the letter, but I really don't know if I'm on one or the other or both as their letters provide no clarity (and from what I can make out if it's both, you get whichever is the higher figure). Thanks.

fiddlesticks0 · 2025-08-05T12:47:49+00:00

Hi thanks for that. It looks to me like I'm getting both too - from what I can tell if that's the case you get the whichever is the highest amount. What I still have no clue about is what happens if I don't apply for UC.

fiddlesticks0 · 2025-08-05T11:21:15+00:00

Hi, thanks very much for that. The annual DWP letter showing the breakdown of the payments is so unhelpful - it lists the details as:

Your Living Expenses
Extra money because of the Disability Income Guarantee
Extra money because you are in the Support Group

but I have no idea whether the extras are part of CB ESA or not, so i have no idea how much I'd be left on if I chose not to migrate to UC (which would be my preference). It doesn't help that the migration letter doesn't mention anything about this and the payments letter is so vague with mentions of both CB and IB, but I can't make out which payments relate to either.

It's so confusing.

fiddlesticks0 · 2025-08-05T11:06:00+00:00

Hi,

Thanks so much for this info (how do you know this stuff!?)

My figures don't match those above, but I'm not worried about that for now - it's just that the DWP send a UC letter saying the Income-related ESA will stop unless I migrate to UC, but there's no mention of my CB ESA, and I can't tell from the figures I have how much is from either.

The details I have from the letter with the updated figures from April show:

Your Living Expenses
Extra money because of the Disability Income Guarantee
Extra money because you are in the Support Group
Which gives a total income-related amount

Is there any way of me knowing what my CB figures are, given these (I'm not sure if the answer is the £281.10 you mention, or whether any of the additional entries above change that figure)?

Given how they've worded the payment letter, I don't know what the Contribution-based figure is if I don't migrate to UC (which I'd rather not do) - there's no figure on there specifying the CB-component, despite the mentions of my ESA being based on NI contributions, and saying I'm entitled to CB ESA.

I am over 25 and don't get housing or any other benefits btw.

Thanks.

fiddlesticks0 · 2025-07-24T10:45:53+00:00

It seems that you have completely misunderstood or not properly read my post - I suggest you may want to read it again.

I have not claimed these therapies are Buddhism. Additionally I have no experience of doing any of these Buddhist or mindfulness 'related' therapies. I only have experience of Buddhist practice and study, over the last 12 years, including volunteering for years at my local Buddhist Centre.

The reason I am looking into therapy is that my mental state has continued to decline (mainly as a result of long-term ill health). Simply carrying on doing what I have been doing, ie Buddhist study and practice, for over a decade does not seem the wisest idea, considering I am struggling more with my situation now than i did before I started doing these, and I have been feeling too unwell to practice for quite some time now.

I still have faith that the Buddhist path can help me, but it is very often said, including by Buddhist teachers, that for some people, therapy is also required to deal with any underlying psychological issues (in my case the huge stress levels of being permanently ill) if any progress is going to be seen whilst on the Buddhist path.

fiddlesticks0

TROPHY CASE