Michael Sharpe skewered by @JohntheJack on Twitter

Indigophoton said:

Sharpe retweeted this. Presumably he didn't actually read the quote from the forum, since it doesn't say what cfsresearch claims. In fact, bit of an own goal.
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How the hell did I end up on twitter without even being on twitter? Nice to see me totally quoted out of context too.

My point was like asking if faith healers had got hold of healthcare policy and then everyone pointed out their rubbish would it make sense to do more faith healing studies and "do them better".

I see that person Isn't quoting me when I said that the BPS crowd has had 30 years to prove their treatments work and have failed despite using up most of the funding.

They have however managed to take over healthcare policy using pseudoscience.

The problem with PACE is the BPS crowd themselves didn't like the projected results so changed the protocols halfway through because they very well know their treatments don't work.

Then they tried to hide all the objective data until the law courts told them to release it and they are still hiding some of it.

It doesn't matter "how well" you do faith healing, witchcraft, exorcism, or homeopathy it doesn't work because its pseudo science.

So you just have to fudge the results to show a positive effect.

Who wants more of that?
 
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Indigophoton said:

Sharpe retweeted this. Presumably he didn't actually read the quote from the forum, since it doesn't say what cfsresearch claims. In fact, bit of an own goal.
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Does anyone think this could be in any way interpreted as being against science? Only if you have problems distinguishing between junk science and proper science. Wait... that's exactly his problem isn't it?

Mr Jameson is also doing a fine job eroding his credibility as "published researcher" ;).
 
I sometimes suspect Jameson is a crafty double-agent, out to make CBT/GET promoters look bad, but other times he's clearly too into it. He does so many of the things I dislike about the worst patient 'advocates', but it seems more unpleasant when it's been done in defence of authority figures.

PS: Hi Jameson. Welcome to the forum. What will it take to make you realise you've spent the last two decades of your life making things worse for CFS patients?
 
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Mike Godwin
Replying to @AnneDean10 and 2 others
It seems clear to me that the PACE trial will continue to be used to deny patients benefits. That sucks.
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@Mike Godwin

Yes Mike and Wessely is on record telling influential people that benefits are bad for people with ME, I am sure someone can link you to that.

Also its not just ME patients because the PACE trial was used to grow the dubious catch all brand of "CFS" preparing for the illness denial juggernaut of "Medically Unexplained Symptoms (MUS) and functional disorders".

Their own literature states that doing tests on people is unnecessary and unhelpful as it "encourages people to believe they are ill". If your wife or daughter or son got ill would you want this kind of logic applied to diagnosing them?

So by default you end up without medical tests and therefore "medically unexplained".

Try fighting the current disability system getting sicker and sicker due to being undiagnosed effectively with that logic.

People have even been sectioned because of this simply because they refuse to accept the treatments of CBT and GET as they are harmful.

One women was sectioned had exertion forced upon her and then died after her condition deteriorated after being released from hospital. Her name was Sophia Mirza.

There are hundreds of examples of such events and parents of children have even had their kids taken away by the state for questioning the efficacy of the treatments that have made their kids worse.
 
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Simon Wessely@WesselyS
Putting to one side a further example of my school friend @sfmnemonic famous Law, what have been the 'horrendous' consequences of the trial, since its publication in 2011? I don't think it changed clinical practice in the UK, but perhaps it did elsewhere?
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Utter delusion, the PACE trial has maintained the nightmare and reinforced it on people until recently when a number of academics, doctors and journalists woke up to it and clinical practice may actually now get changed simply because of the critiques of the bogus trial that the BPS crowd touted all over the world as proof a curative treatment via the Science Media Centre (SMC).

Wessely and chums didn't use the PACE trial to change clinical practice they used it to maintain the disaster.

That's the whole point.
 
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Why aren't the twitter responders also pointing out that PACE and its promotion is directly responsible for the not uncommon phenomenon of children (and adults!) being forcibly removed from their homes and care networks, denied proper and appropriate medical treatments, traumatized, and abused? This is the most "horrific" of the effect of PACE's bullshit, and I really hope someone will point out this vitally important reality to those who may not know, and to those who are pretending not to know.

Being denied benefits and healthcare is a terrible consequence of the PACE propaganda, but what I describe above is the truly shocking and horrific outcome and people need to know it is happening. Please someone tweet a link to Karin's speech at the Norwegian #MM.
 
Allele said:
Why aren't the twitter responders also pointing out that PACE and its promotion is directly responsible for the not uncommon phenomenon of children (and adults!) being forcibly removed from their homes and care networks, denied proper and appropriate medical treatments, traumatized, and abused? This is the most "horrific" of the effect of PACE's bullshit, and I really hope someone will point out this vitally important reality to those who may not know, and to those who are pretending not to know.
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It's harder to get evidence for rarer events like that, and it's normally best to focus on the concerns with stronger supporting evidence. Also, I don't know how 'directly' the PACE results are involved in some of that - anyone know of a child custody case that cited PACE to justify removal of a child?
 
I understand your caution, Esther, but these events are not rare if we can start counting the people who have undergone it on many hands. If patients are not being forciby removed, families live in threat of that. This quiet deadly truth needs to be known.

PACE is the paper that most broadly and vehemently psychologised the disease, and that is what these "well-meaning" authoritarians have based their PoVs on--"proof" it is psychologically mediated.

How many people in your estimation need to suffer and die until we're okay to talk about it?

Have you watched Karin's speech? You will surely gasp out loud when you do.
 
Esther12 said:
It's harder to get evidence for rarer events like that, and it's normally best to focus on the concerns with stronger supporting evidence. Also, I don't know how 'directly' the PACE results are involved in some of that - anyone know of a child custody case that cited PACE to justify removal of a child?
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Its not only a matter of whether the actual event is rare or not its the fact that the threat applies equally to all parents of children with ME and potentially causes them to toe the line or live in fear because of the BPS crowds reinforcement of their beliefs using the PACE study.

In the Soviet Union for example they only had to kart off a few people who speak out or refuse to toe the line and everyone lives under the regime.
 
I'm certainly not trying to downplay the serious cultural problems PACe has fed into, or the justified fear and anxiety many patients/parents now feel in their interactions with British medical professionals, I'm just saying that this is the sort of thing where it's difficult to present clear and persuasive evidence of problems to those who have not experienced it themselves. I think that for now we're probably best off focussing on the arguments that have the strongest supporting evidence.
 
Allele said:
I understand your caution, Esther, but these events are not rare if we can start counting the people who have undergone it on many hands. If patients are not being forciby removed, families live in threat of that. This quiet deadly truth needs to be known.

PACE is the paper that most broadly and vehemently psychologised the disease, and that is what these "well-meaning" authoritarians have based their PoVs on--"proof" it is psychologically mediated.

How many people in your estimation need to suffer and die until we're okay to talk about it?

Have you watched Karin's speech? You will surely gasp out loud when you do.
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This is very unfair. Esther isn’t denying it happens or how awful it is. Just that finding evidence that shows a link to PACE is difficult in those cases and that it’s easier to prove a direct link for some other things.
 
Sorry if I was unclear, I wasn't being unfair or directing animosity to Esther. I know Esther understands this.
I am trying to make the urgent point that it is necessary for the wider world to understand the nature of the influence this paper and BPS people have had.

THAT is what is terribly unfair.
 
TiredSam said:
An analysis of who he offers what drink to would be interesting - water instead of dinner, beer with a chat, wine for a bet - there's obviously some kind of scale in his head. I wonder what it would mean if he offered someone a cup of tea and a biscuit?
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A cup of tea, a Bex, and a good lie down, as we used to be told by advertising gurus in Australia.

It has become a generic put down, meaning stop being a drama queen. Typically used as a feminised insult, because the product was pitched at women.

(Bex was a headache 'remedy', in powder form. Widely promoted and used, before it was discovered to cause kidney damage.)

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large donner said:
Also its not just ME patients because the PACE trial was used to grow the dubious catch all brand of "CFS" preparing for the illness denial juggernaut of "Medically Unexplained Symptoms (MUS) and functional disorders".
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ME patients have been used as the means to inject this madness into the entire health system.

large donner said:
In the Soviet Union for example they only had to kart off a few people who speak out or refuse to toe the line and everyone lives under the regime.
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This.
 
Esther12 said:
I'm certainly not trying to downplay the serious cultural problems PACe has fed into, or the justified fear and anxiety many patients/parents now feel in their interactions with British medical professionals, I'm just saying that this is the sort of thing where it's difficult to present clear and persuasive evidence of problems to those who have not experienced it themselves. I think that for now we're probably best off focussing on the arguments that have the strongest supporting evidence.
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Perhaps there is an issue as to who might best benefit from the message. I agree that to try and discuss this with MS et al is a total non starter (IIUC that's what's being discussed). While it's hard to quantify and present hard data the parents/children families that have been affected may be able to speak out if the circumstances allow. Is it best to put before politicians, news media? Perhaps it needs some testing of the waters.
 
Snowdrop said:
Perhaps there is an issue as to who might best benefit from the message. I agree that to try and discuss this with MS et al is a total non starter (IIUC that's what's being discussed). While it's hard to quantify and present hard data the parents/children families that have been affected may be able to speak out if the circumstances allow. Is it best to put before politicians, news media? Perhaps it needs some testing of the waters.
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That is what Dr Myhill is attempting to do with her GMC complaint and 210 people joined her and the other (unnamed) Drs in that complaint. According to latest update I saw discussions with GMC about whether they will investigate are still ongoing.
 
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