Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

[Cfs2019]

Could some very basic graphics that could easily be shared on twitter might help with the message? For example:

View attachment 24012


(I know it's very rough as I'm still a bit too brainfogged to do anything elaborate. I don't really have the energy for engagement on social media, so I'm happy for people to use this or if they'd like to adapt it for themselves.)

The strange thing is with these therapies is even if that is true and it’s caused by emotion or ‘energy-in-motion’ as they like to say the the way they go about helping you is awful

If you’ve got emotional issues that need dealing with you don’t stand ina circle and shout stop or read out a flash card like with Mickel Therapy, no wonder so many people have been messed up by it


They’re not even proper therapists, most of them have just done a 2week course one energy crystals or something mental like that

 

[deboruth]

Surely someone needs to begin an academic project of interviewing and testing the SMILE children to gauge the effects and reactions of this trial being double-bind, as opposed to the scientific ideal of double blind.

Please note: Esther Crawley has just gotten nominated for the award that Simon Wessely got for complaining about how ME people "threatened his life." Clearly this Crawley train is bound for glory. This is what we get for not suing for malpractice, not suing for libel (about complaints of threats and harassment) and not filing complaints about child abuse, misdiagnosis and maltreatment.

 

[Seven7]

Well if EC gets A tittle like SW, then we are sure they were acting on the government Behalves. This just thickens the plot.
Why would the government beneficiate from CFS being treated as Psychological. And who is behind the recommendations? Is there a way to know like who nominated you for Knighthood or whatever was the SW tille got? see and who is behind's EC's.

 

[andyguitar]

UK Gov could be hoping that if CFS and ME is presented as a problem of the mind that will let them off the hook when it comes out that it is physical in origin. They can say that it is not their fault that thousands of people have had the wrong diagnosis and treatment for years. They will simply blame the Medics for this cock-up.

 

[RogerBlack]

UK Gov could be hoping that if CFS and ME is presented as a problem of the mind that will let them off the hook when it comes out that it is physical in origin.

This is not how it works.
There is no accountability of any department or organisation in any meaningful way that would make them care at all about ME/CFS treatment in that manner.
This is the prime problem I have about treating it as a 'conspiracy of government' - it's not.

It's external people and organisations driving government in ways that profit them either reputationally or financially.

They (government) don't care about getting off the hook, because they were never on the hook.
Never mind that there have been a dozen or two governmental changes, and many more ministerial ones.

 

[Londinium]

This is not how it works.
There is no accountability of any department or organisation in any meaningful way that would make them care at all about ME/CFS treatment in that manner.
This is the prime problem I have about treating it as a 'conspiracy of government' - it's not.

It's external people and organisations driving government in ways that profit them either reputationally or financially.

Agreed. Having worked in both the public and private sector I’m wary of any government/corporate conspiracy theories because in most cases it requires an implausible level of competence from the parties involved.

Taking it one step further, there is no external conspiracy either, in the sense of BPS proponents getting together in a smoke-filled room to agree to fake evidence that ME/CFS is psychosomatic and portray all patients as psychotic if they complain about the science used. IMHO, the truth is far more mundane: they had a theory based on some not-great reasoning, got a lot of money to test it, then realising that a negative result would be damaging to their careers (and most likely still really believing in their theory), they massaged the analysis to give a better looking result. Something that happens very regularly across different fields of science.

My guess (and it is a guess) is that some of that field did receive a small* amount of abuse - and when the media (aided and abetted by SMC) turned it into a far more simplistic 'all critics of our work are anti-science and abusive' there was little incentive to correct that view because it had raised profiles and reputations amongst people not familiar with the work, and headed off hard questions around methdology. Again, no actual conspiracy to portray ME/CFS patients as mad, just a series of events accompanied by the kind of moral compromises that are common (not necessarily excusable) to many ambitious types as they try and ascend the career ladder. After all, it would take a lot of courage to stand up and say 'hang on, many of these patients aren't abusive at all and are raising valid problems with my work'. Easier to tell everyone, and oneself, that any criticism is just because patients don't want to accept they're mentally ill.




*My use of 'small' does not imply excusing any abuse if it did occur, more a comparison of the ratio of actual abusive messages received against just trenchant criticism of their work - furthermore, if anybody is abusive to a BPS proponent it actively harms the rest of us.

 

[Seven7]

Well if the vaccine people are really the culprits( was a contaminated vaccine to begin with) and the government made the vaccine mandatory or covered it up, they might be liable. If not financially, the corruption in the institution might be bad press. We will need to wait for David T to keep digging on the money trail and the history see what shakes out.

 

[Londinium]

Well if the vaccine people are really the culprits( was a contaminated vaccine to begin with) and the government made the vaccine mandatory or covered it up, they might be liable. If not financially, the corruption in the institution might be bad press. We will need to wait for David T to keep digging on the money trail and the history see what shakes out.

Except there's precisely zero evidence that ME/CFS is down to vaccines. As evidenced by the fact that vast numbers of patients develop ME/CFS not following a vaccination.

Please be aware that every time ME/CFS advocates start making poorly-evidenced claims about vaccines it makes it very easy for those defending similarly poorly-evidenced claims about GET to portray us all as 'little better than anti-vaxxers' (pretty much a direct quote from the SMC). It's a massive own goal.

 

[Seven7]

Except there's precisely zero evidence that ME/CFS is down to vaccines. As evidenced by the fact that vast numbers of patients develop ME/CFS not following a vaccination.

The theory was not vaccine caused it but whatever the agent was, first was a cross contamination in vaccine ( a vaccine was develop in the same place where experiments were being done). But I agree, we shouldn’t go by what people say. Going by evidence something is going on for sure. We will wait until David T keeps inestigating and see what he comes up with, so we know what that “something is going on” is. But at this point and all the cover up, would be naive to believe all this Agencies are that incompetent.

 

[JohntheJack]

Agreed. Having worked in both the public and private sector I’m wary of any government/corporate conspiracy theories because in most cases it requires an implausible level of competence from the parties involved.

Taking it one step further, there is no external conspiracy either, in the sense of BPS proponents getting together in a smoke-filled room to agree to fake evidence that ME/CFS is psychosomatic and portray all patients as psychotic if they complain about the science used. IMHO, the truth is far more mundane: they had a theory based on some not-great reasoning, got a lot of money to test it, then realising that a negative result would be damaging to their careers (and most likely still really believing in their theory), they massaged the analysis to give a better looking result. Something that happens very regularly across different fields of science.

My guess (and it is a guess) is that some of that field did receive a small* amount of abuse - and when the media (aided and abetted by SMC) turned it into a far more simplistic 'all critics of our work are anti-science and abusive' there was little incentive to correct that view because it had raised profiles and reputations amongst people not familiar with the work, and headed off hard questions around methdology. Again, no actual conspiracy to portray ME/CFS patients as mad, just a series of events accompanied by the kind of moral compromises that are common (not necessarily excusable) to many ambitious types as they try and ascend the career ladder. After all, it would take a lot of courage to stand up and say 'hang on, many of these patients aren't abusive at all and are raising valid problems with my work'. Easier to tell everyone, and oneself, that any criticism is just because patients don't want to accept they're mentally ill.




*My use of 'small' does not imply excusing any abuse if it did occur, more a comparison of the ratio of actual abusive messages received against just trenchant criticism of their work - furthermore, if anybody is abusive to a BPS proponent it actively harms the rest of us.

I agree I don't think there's ever been any sort of conspiracy.

 

[JohntheJack]

Update:

I have today received the result of the review undertaken by Bristol about the SMILE trial data.. They still claim an exemption. I'll refer it to the ICO. It usually takes about 4 months to get a decision.

 

[Londinium]

This is from an article on an unrelated topic (that the evidence behind 'unconscious bias' is a bit iffy scientifically) that I thought illustrated my point above quite well:

One of the major contributing factors to the replication crisis, which is centered mostly on social psychology, is human nature. Humans, being humans, do not like hearing that ideas they’ve worked on for a long time might have to get tossed in the bin, or at the very least revised significantly. That’s why some researchers — though by no means all of them — have responded to good-faith critiques of their work by attempting to derail the conversation, calling their critics crazy or mean or attributing to them dark ulterior motives. The researchers who attempt such derailings tend to bee established, well-respected ones who have benefited from the old regime — the regime that led the field into its current, precarious situation, and which is now threatened by a growing reform movement.

 

[JohntheJack]

This is from an article on an unrelated topic (that the evidence behind 'unconscious bias' is a bit iffy scientifically) that I thought illustrated my point above quite well:

Excellent quotation.