BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

I agree that there is a big problem here.
Being an 'honest broker' actually requires an awful lot of careful research. Which is what scientists are supposed to do and the last thing they are supposed to do is try to give 'balance'. Balance is in a sense a laziness - an inability to present the evidence in a way that reflects its value.

There is no doubt that if a journalist is unclear about how to analyse things they are justified in presenting both sides simply to provide material for the audience to assess. But it isn't ever like that. The 'story' already revolves around an interpretation. Moreover, if the issue is being rigorous, as indicated, a scientist would not just present evidence on the basis of who has shouted in their ear or made use of social media.

I was interviewed for the piece but got the clear impression that this was to see if anything new came up they had not already got material on. I didn't say anything beyond what had been eloquently said by scientists and patients. But I did get the feel that the whole thing was being engineered to produce a 'story' that was an 'exposé' of LP and that beyond that was too complicated to bother with. The interview was structured as if on air. There was no attempt to clarify points or talk at a level that probed further. Prod the expert and see if he comes up with some good quotes seemed to be the line.

What I tried to put across was that LP was a violation of human rights and indeed humanity itself. That didn't seem to be of interest.

 

yes i'm afraid i agree, i'm bracing myself for the suggestions from friends/family etc already

 

No, I didn't realize that about her. I don't remember hearing that in the piece. Was that mentioned? If it was and I didn't hear it, my bad. And if it wasn't mentioned by the BBC reporters, it should have been. I agree, that would make a difference. And I agree it's best to include others commenting on what these stories might mean or why they happen. That's different from saying no such stories should be included at all. They need to be contextualized.

 

I hope not! I"m curious if most here agree that the piece will serve more as a promotion of the LP rather than detracting from its appeal? I mean all the comments here suggest that the journalism model is broken. Maybe it is. Reporters are not scientists and cannot be expected to be. But it might be that many things are too complicated for journalists to touch. I don't know. As I said, I'm not working much as a "journalist' these days for some of these reasons. I might have to rethink some things based on this conversation.

 

I don't think it will. But nor will it do them much harm.

Operations like Parker's can always find people with a platform who're willing to shill for them, and it distorts perceptions of the weight of evidence in their favour. A few silver-tongued grifters, glossy-haired media types and hopeful recovery stories can easily get as much exposure as a whole regiment of doctors talking dry common sense or sick people claiming harm. They're more interesting and their pictures are nicer.

 

Indeed I think the added explanations include:

- there is a massive added disability/ people sticking their foot out to trip out disabled people situation for ME/CFS (and being told it's 'helping' by those who incite it or themselves). Deciding to lean into the bigotry, ironically for any secondary benefits of 'thank goodness you are better' related praise, but mainly the dropping of the jokes and snides and undermining actually means less work - sometimes this could be eg 100% of what your disability is on top of that disability. I think in many workplaces if people tested it then you are given more leeway if people think you are either crap at your job or good at it and lazy in some way than if you use the illness explanation (increased assumptions and scrutiny where they see things that aren't there)

- ME/CFS is one of those conditions that is almost the opposite of all the cliches people say about addicts. What you do learn to hide is how ill you are and the after-effects. So you have secret naps in order to complete that work task and sneak in extra hours at the weekend in case you lose your job. You come up with excuses that make you look crap over saying I was ill and slept because you get less nonsense. SO if you want to do that above everyone else is happy to be 'deceived'.

- ME/CFS is the kind of illness where people kid themselves for the first sometimes decade depending on the committments over that time period vs the illness. You can't cheat it but you can think you are for 6months and push up what you do, often not noticing you are just economising and being tenacious elsewhere and pushing appointments that can be done later but do eventually have to be done (hair, dentist and so on). In fact you can be slightly on adrenaline and think you are getting away with not needing the extra sleep and it being like agony getting up to those ten alarms but once you've got going etc. It then takes you 6mnths to a year after it starts to slowly result in deterioration 6-12months in that it isn't something temporary or that you can work around. And then how do you have the conversation with the people who are going to be far from kind at hearing 'turns out we are back to that. again.'

 

Having listened to it fully now I think the BBC journalist did a decent enough job. I'm sure it can be difficult for journalists to discern truth from honest dispute from lies in a case like this, and that difficulty is multiplied when there are people with excellent credentials - at least on paper - who are happy to promote this mind-body gibberish.

Extreme care needs to be taken with people like Parker, whose very career is predicated on manipulating language and behaviour. While he needed to be given an opportunity to respond to any allegations made that should not be an unqualified right; fortunately, he undermined his own case with the "anti-recovery activists" quip. The "recovered" patient needed to be challenged openly about the fact that she was an "NLP Master Practitioner and Trainer" (link) before she supposedly recovered from long COVID and hence has a personal & financial interest in promoting the pseudoscience of NLP. (In fact that is not the only pseudoscience to which she has committed herself, being also a "Myers Briggs Type Indicator").

I place particular blame on the universities that sacrifice their academic integrity by awarding doctorates to Parker and his ilk. Without that London Met "PhD" after his name he would just be a random life coach.

Given that there have been at least two attempted suicides plausibly associated with the LP and a number of reports of participants' physical and mental health worsening as a result of undergoing it any coverage needs to be very carefully weighed for its potential effects and ethical implications.

 

However, the main points to bear in mind are:

- is someone checking how ill and what these individuals were doing before they were cured. There will always be some for certain conditions who are just grifters who played the long game. Then there is the 'had something': All the stories in general (not just LP) I get from so and sos, always hearsay from someone saying 'their mate' are then someone who more like what the Minister said in the debate 'couldn't always go to their son's football game' level or 'got tired'. And that is for those who were ill with witnesses for a long time. That isn't the same as having ME/CFS , and certainly not at the level most who are having it pushed at them have. There is a certain type who has an illness for x time and then crows about recovering themselves. Quite different to 'fingers crossed I seem to be on the mend' types who go back to their old jobs and enjoy being able to say yes to invitations with their renewed energy instead.

- this 'programme' comes with a promise of a career path, and indeed there are many other 'cushy jobs' out there dependent on 'being recovered'. For those who are milder then it might offer just the lifestyle change that might work very nicely vs a job that had fixed hours and working etc or 'the promise' might be of that. Given how these conditions work. Until you are damn sure you don't want to go down that option then you wouldn't be 'equivocal' about your recovery or your previous illness. That's no small thing to turn down given the lack of decent-paid flexible jobs for people who had their qualifications and CV wrecked by having such a condition.

And the most important thing:

- these things are insidiously sold not to those with the illness directly, but by creating utter dystopia to them by selling stigma and bigotry to those surrounding them. Suggesting to the general public 'they could do something about it if they wanted to' and 'it's their mindset'. The bullying can be extreme, and could go as far as if people on the street and locals know then you are outcast and talked about and worse. Pretending not to have it anymore at least shuts that up. In fact the one thing the LP and being public about it could offer is that 'wipe the stigma off' if someone is kicking themselves that those who aren't close to them 'know' (and wouldn't know any different if you weren't cured behind closed doors).

- a LOT of people who end up on this, haven't really done so by choice, and have been funded by family members who 'seem to be desperate to help them' (and the pwme is actually worried for them, plus after all there is nothing we can do that makes our health OK and the future won't change, so maybe faking it means we aren't 'bringing down' more people) or 'persuaded by' or even given ultimatums by supporters.

 

Very good point about the 'giving a microphone' issue. What these people sell is prejudice and propaganda of values that I'm surprised aren't banned from being advertised or from papers that are basically just advertising as they don't contain scientifically legitimate methods (and issue and question regarding the psychosomatic papers too, are their literatures just 'that' too really).

Getting some 'reach' when the having to be carefully balanced and wordy stuff has been forgotten but the repeat of the advertising slogans - whether it be grim name-calling for those to send or promises or whatnot - works on getting these one-liners here or there repeated, whatever the context.

There are a heck of a lot of people I know who have done NLP, in career contexts, and remember the way it came out being shocked but them thinking nothing strange of it - just a set of work skills and career skills that helped them do well mindset. So yes, it's scary how this general concept is sucked up, and if they are one who is suggesting it 'for others' mightn't look too hard beyond the 'good bloke' type crap whilst they don't even realise they are just thinking what is best for themselves (which is a lot more people than you think) then 'shoving someone off to anywhere else' as a bit of 'advice' rather than having to be sympathetic to a family member, friend, colleague...

 

Agree. Articles can never go far enough in underlining the harm that can be caused by these things.

In fact there isn't properly articulated, yet, details even on the CFS-CBT even though it is basically like trying to be a conversion course - could it be that the 'disability is just a state of mind' is now becoming a big sales pitch and I know that seems to be Sharpe's push for the last x years when he is suggesting all ill people should be assumed to be part mental health etc.

vs anyone properly underlining that as this is incorrect, asserting and forcing people through said dystopia is actually causing the massive harm it claims to help.

So we have this strange thing in the world where everyone has been persuaded to forget all the old psych experiments that caused massive harm and think there is no such thing as it causing harm ... so.... no harm no foul other than the money spent.

EDIT: it feels like it has got nearly so bad that the suggestion is all disabled people should be 'treated' with CBT (as if 'generic' or 'transdiagnostic' and 'CBT' doesn't mean that it isn't actually CBT in a mental health sense or 'a treatment' or 'therapy', just a mode of delivery using an acronym stolen from real treatments that were developed for actual conditions)

for them to prove that is wasn't 'mental health' or 'mindset' - whether to employer or the government or a medic. As if there is a belief that forcing treatment that isn't needed onto people, and indeed in this instance isn't actually a treatment, therapy or scientific, just 're-education' can't do harm. IN reality it is punitive, and very much based on others stigma of 'mindset' hidden under falsely using the term 'mental health'. ANd I think that is who the LP is selling to.

It is all political propaganda really. And they know what buttons to push.

I can imagine it perhaps happens with people having to tick the box they did the 'how not to eat badly' course even when they are slim and known to have a good diet for certain conditions too. And might be use like using physio before medical treatment as a hoop to go through to disguise waiting lists.

But this CBT and LP and whatever they will reach for isn't harmless and only a waste of time and you might learn something, and isn't top tips based on science. It insinuates mindset issues of people with disabilities that would affect their employment etc., is focused on sewing self-hatred and self-denial based on the false beliefs of those who made them up and who have been called out for said basis not just being wrong but counter-productive to the condition. Or being delivered to people who can't waste the energy or time on it - because the condition is energy limiting and it is needed for essential to life activities for which there isn't enough. Yet sadly the concept is disgustingly tempting to those with certain ideological leanings 'for others'.

 

lol i appreciate you're looking for others' opinions not just my opinion twice... but i just wanted to add...

People have suggested LP to me a few times already, there is a thread here on S4 called something like 'have you tried' or some such. People who care about are most likely to suggest things and to be 'why dont you try it, i know they were saying it wasnt 'scientific' but if it helped just one person why not try it, dont you want to get better'

So the people who dont want me to continue to suffer are most vulnerable to hearing the show as a promotion. Then there are the 'others'. Them. The great 'committee of They'. The ones who already believe its a psychosomatic thing, who already have some absurd idea about ME/CFS/LC in general. That its an issue of wrong mindset in some way. They will for sure hear it as a promotion. They will, if they heard the show, hear it as an "it works for those who believe in it"

I have 2 family members who already despise the whole 'positive thinking' culture & they would hear the negatives.... but thats part of the poroblem, while i acknowledge that the reporter made a good attempt, it was just ambiguous enough for it to simply be able to confirm whatever the listener's beliefs/ideas about such things already are... and since the majority view of ME/CFS/LC conforms to BPS ideas....

 

I'd loved to have seen that!

Or to have heard what you suggested.

Thanks for trying.

 

too right

is it that they need someone in their stable who can give them the confidence that these things are indeed BS and how to be able to criticise them - a load of one-liners and a few names who stand behind these could probably cover most possibilities as it is such an iterative business (the BPS stuff in general that is)

I know the BPS like to play the sophist game of 'you can't disprove' ergo letting them saying any old thing which they never proved either and can certainly be said to be made up nonsense, but they then do the attrition with rhetorical sealioning etc. so I can understand the not wanting to get bogged down but....

this is getting them further bogged down and making them look equivocal, which is really bad for their audience of patients many of whom might be new and need to know if something isn't based on anything useful

 

agreed on the 'balanced journalism' protocol and the myth about how it can only be implemented a certain way to be balanced in that way, is really going to struggle with certain situations.

In this instance it is hard to separate the fact that any person who is recovered from the LP is granted an entry ticket to 'become a coach' as long as they tow that party line and stay recovered. Which makes it hard to separate 'recovered' from 'future / aspiring / coach' or at least those not wanting to close down their options.

I think that if the Lightening Process was seen as the pyramidy model that it is, over the veneer of the course being the product, then the reporting and way balance was approach might need to be different.

 

Personally, I do think democracy and likely the human race are doomed. Climate change will do our species in, if not the other disasters we're creating. Most journalists are not specialists. Most have no training in health or science. That is not going to change. In fact, it's getting worse, given the decimation of the journalism workforce amid online pressures. Rachel Shraer and Paul Grant will continue to do investigative work but will not likely go on to get training in health or science. My empathy is for journalists in those situations doing the best they possibly can to sort out complicated situations.

Some, through long experience, learn something about science. Some scientists/doctors/etc become journalists and so can do a good job. For the most part, the work will be done by generalists like Rachel Shraer.

 

I'm old enough that I probably still somewhat feel more confident in trusting a brand I haven't heard of exists if I have seen it on a shelf of a shop (online or not) or it has been reviewed or mentioned by a vehicle I know (like a newspaper review of eg plant sellers), lots of others I know well have bought from them and it hasn't been phishing or a fake website or whatnot.

Being mentioned by the BBC separates it out from the other courses selling fake cures taking place in church halls or rented meeting spaces or wherever across the country.

But then so does the (and I am so outraged this is happenning) idea that any part of or anyone or thing associated with the NHS even 'is in talks with' or gives testimonies for these things.

I do think it's easy to hope it's not that big a deal because it isn't singly responsible for etc but these all contribute to the advertising (7 times) and the picture that might convince someone to shove their loved one off or fork out a lot of money for it etc.

 

'any person who is recovered from the LP is granted an entry ticket to 'become a coach' as long as they tow that party line and stay recovered.'

Actually they are not able to just become Lightning Trainer. They have to do Parker's year long course in NLP, Coaching and Hypnotherapy first.


Lightning Trainer Training:
'The role requires an in-depth understanding of the use of advanced language patterns, NLP and Coaching so your first step on this journey is to take the Clinical Diploma in NLP, Coaching & Clinical Hypnotherapy followed by the Clinical Diploma in NLP, Coaching & Hypnotherapy in NLP, Coaching and Clinical Hypnotherapy before embarking ...

Cost?
circa £5,000 for the 'Clinical Diploma'

Then circa £2,000 for the 'Master Practitioner in NLP, Coaching & Clinical Hypnotherapy'

Then:
Lightning Process Practitioner Training

£2100 (£1750 +VAT), plus UK Licence £544.50 (incl discount for 1st year)

https://www.philparker.org/training...ing_wp_cron=1716769993.4677228927612304687500




Note, Parker's description of the 'Lightning Process Practitioner Training' used to include the explanation that most of the 3 days on that course was learning how to select (and screen out) people who are (or are not) suitable to do Lightning. What the Trainers are taught to do is look for agreement, suggestibility to NLP Commands, and obedience to the trainers suggestions, and to screen out people who question ('Not Ready'). That doesn't mean that ME patients who do Lightning are gullible - it means they are totally desperate to recover.


Or of course, having forked out you could avoid paying Parker the annual license fee and a percentage of your earnings from every single client you recruit to do Lightning with you - by devising your own 'cure your ME' program, using the course material, giving it a fancy name and including the 'Stop' technique (Tell your symptoms to 'Stop!')


BUT, as it was somewhere stated that there are only 14 Lightning Trainers in the UK, and Parker has been advertising Lightning Trainer courses since around 2005, could it be there are numbers of disgruntled people out there who did the Lightning Trainer Training, and couldn't make a living at it, or became disillusioned? Would any of them spill the beans?

.