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

Midnattsol said:
This is also true for LP, at least it was. We have a case in Norway where a participant said on a TV interveiew she was well, but later she said she had been told to do this as part of her recovery. I think the LP practioner was with her in the interview and they discussed recovery. I don't remember where her "I'm didn't recover" story is online, do you remember this @Kalliope ?
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Were you thinking of this article ?https://www.tv2.no/nyheter/innenrik...tter-a-ha-forsokt-lightning-process/13207525/
 


What Phil Parker fails to understand about people with infection associated chronic conditions is the sheer will and deep hope necessary to live with PEM/PENE doesn’t need “retraining.” It’s exceptional the way it is. And it’s unfathomable to someone who doesn’t live with it.

People living with PEM/PENE are functioning exceptionally under exceptionally difficult circumstances, actually. Maybe we should support them instead of denying their coping responses in the face of living with severe metabolic, vascular, inflammatory, and immune abnormalities.

Like, jeez Phil. How could a person get this so hopelessly backward? I dunno. Basing a treatment regimen on denying one’s own obvious medical condition seems like it advocates for a person worsening. Like being an “anti-recovery” advocate of some kind.

Am I doing that right?
 
John Mac said:
https://www.dailymail.co.uk/femail/...-recordings-rower-Team-GB-Oonagh-Cousins.html

Health company is accused of 'exploiting' Long Covid sufferers with £1k Zoom course that tells them to 'change your thoughts' and 'walk around symbols' - as Ex Team GB rower tells BBC exposé she felt 'blamed'
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Mail Online reached out to Phil Parker for a comment which is added at the end of the article:

Dr Phil Parker said: 'Oonagh's claims of "feeling blamed" are difficult to understand as they are completely at odds with the central concepts taught in the Lightning Process, which emphasise the importance of being kind during the process of recovery.

'So many worldwide are still suffering with Long Covid and there are promising studies into the Lightning Process showing recovery for those with this illness and other chronic fatigue syndromes.'
 
Hutan said:
I'm not seeing much of a turf war.

We saw the UK Royal Colleges submitting comments in favour of the Lightning Process. And the Lightning Process is being trialled in the NHS.

Here in NZ, we have an ongoing battle with the Royal College of GPs, who are promoting the Lightning Process at every opportunity - at their training events, in education content for GPs. It's been used in publicly funded rehabilitation clinics.

It's all just one big morass of pseudoscience. And the doctors in charge don't seem to be remotely embarrassed. I guess it says clearly what they think of us - any old placebo will do to get us abandoning our false illness beliefs.
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I am really concerned LP is being trialled in LC clinics in the UK.

I am also really concerned insurance companies in NZ see LP as a legitimate treatment they recommend for LC. (as reported by members of LC/ME support groups I belong to)

Even though we don't have LC or ME/CFS clinics in NZ, the medical community often turn to the UK to see what they are doing (as well as Australia and the US) and use these examples to legitimise new services without doing any real research into it....(or not having the public servants to research it, as they have all lost their jobs as the government tightens it's belt.)

I am very concerned by the news LP is being used in rehab clinics in NZ? which are you referring to Hutan?

The Royal College of GP's in NZ are divided between the LP promotors like Prof Bruce Arroll at Auckland University, teaching LP to GP's at CME conferences (and certain lecturers in general practice at Otago who like promoting Mel Abbot's kiwi offshoot to LP "The Switch" to their undergraduate medical students) Yes it is the easy way out for GP's and other disciplines.... but I just wanted to point out that there are two camps in our GP college with many members of the Royal NZ College of GP's that support and teach the biomedical approach eg Dr Cathy Stephenson (Wellington Clinical School of General Practice). Possibly there is a turf war going on within there as there is such a gapping void of treatment for ME/CFS and now LC and ultimately is either about power, culture and money when it comes to change within medicine.

People like Bruce and Mel and all the LP coaches exploit this treatment gap by using a psychological pseudoscience. (Yes, I do understand many people in the forum see much of psychology and psychiatry as a pseudoscience but there is a a difference between the LP coaches use of psychological concepts and techniques versus supportive CBT for anxiety and depression associated with having ME/CFS and Mindfulness Stress Reduction Therapy which may help people cope with this debilitating illness but do little to treat the illness (in my opinion, as a former psychiatrist with ME having treated pwME).
 
hibiscuswahine said:
I am very concerned by the news LP is being used in rehab clinics in NZ? which are you referring to Hutan?
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I think I heard that it had been used in Burwood Hospital, for ME/CFS. I may be misremembering.

Edit - I don't think my memory is reliable on this. I've tried to find some supporting evidence and have failed. Maybe it was just a presentation to Burwood staff by an LP practitioner.
 
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@hibiscuswahine It is a tricky situation here in NZ. Arroll & others will never change their position on this and it seems that the GP College & Universities will not do anything either because he is so highly respected and I guess they don't want a fuss in the old boys network. We will have to watch on when he eventually gets the New Year / Kings Honour that he is so obviously seeking with his great work in Manurewa/South Auckland and now at the Auckland City Mission.

This BBC report could spark local media interest in the Lightning Process & the angle of it being pushed by him BUT what is desperately needed here first is robust documentation of the harms it has caused locally and individuals willing to speak publicly about the negative impact it has had on their health. They are out there but there is a degree of reluctance to put their heads above the parapet (probably still traumatised by the experience).

I have raised this a number of times in local forums and we did make a start at the ME Awareness group. My opinion is that we need the Long Covid Aotearoa Advocacy Group, ANZMES, MEANZ, CCIS & others to join forces and get something substantive together and soon.

This would also help GPs and insurers who are considering recommending LP to think more seriously about their duty of care if they suggest something that could harm their patients. It would stop many of them in their tracks. GP education is a major problem - I suspect there is very little understanding of PEM and they are ill equipped to differentiate between common post viral fatigue (6-18 month recovery timeframe?) & ME/CFS. Although MECFS recovery is further complicated with remission/relapse pattern in some.

Once that information is disseminated in a credible format then the advocacy groups need to step up and encourage/support claims of harm to the HDC which is only applicable to health professionals & excludes LP practitioners. Then we will start to see change here.
 
rvallee said:
I left a comment pointing out how the LP and similar 'brain retraining' programs are routinely promoted by MDs, and that it's largely identical to the CBT+GET model, making it impossible to criticize.

Only 2 comments so far.
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Thank you for commenting on Ernst's blog.

Apologies, only able to skim -- but the part on Crawley caught my eye.

From your comment:

"Many of the promoters of the PACE, CBT+GET, model have said good things about the LP. In fact one of the researchers on PACE did a study (Esther Crawley, the SMILE study) of LP, which showed no benefits but was touted as effective anyway."

While I'm sure Crawey was a 'promoter' of PACE I don't think it's accurate to refer to her as a "researcher on PACE"?

Perhaps add a correction?
 
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It's not just LP, either. Just today another form of LP-esque charlatanry ("somatic experiencing") poked its head up with a puff piece in the Telegraph (archived link so as not to give them more traffic):

https://archive.is/20240523112924/h...n-chronic-fatigue-treatments-before-cure-cfs/

You'd think that, with all the money they're taking in, that either AfME or MEA would be proactively reporting these mountebanks of the mind to the Advertising Standards Agency when they make claims about treating or curing ME/CFS.
 
Nightsong said:
It's not just LP, either. Just today another form of LP-esque charlatanry ("somatic experiencing") poked its head up with a puff piece in the Telegraph (archived link so as not to give them more traffic):

https://archive.is/20240523112924/h...n-chronic-fatigue-treatments-before-cure-cfs/

You'd think that, with all the money they're taking in, that either AfME or MEA would be proactively reporting these mountebanks of the mind to the Advertising Standards Agency when they make claims about treating or curing ME/CFS.
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she says that a neurologist told her she'd never recover & never have children... thats a familiar statement its what the woman from the Acuseeds thing said shed been told - by a neurologist.

Who are these neurologists who are so radically far from the establishment view???? They are stepping well outside of the lines. I find it utterly astonishing that any neurologist would tell anyone with a dx of ME/CFS, CF, Fibro, Pots etc that they'd never get better or have children, for a start its not true, and for another it goes 100% against the aberrant belief/FND/Deconditioning/conversion blah blah 'dont indulge their ideas that they're ill' rubbish.

I'm incredulous TBH
 
MSEsperanza said:
Thank you for commenting on Ernst's blog.

Apologies, only able to skim -- but the part on Crawley caught my eye.

From your comment:

"Many of the promoters of the PACE, CBT+GET, model have said good things about the LP. In fact one of the researchers on PACE did a study (Esther Crawley, the SMILE study) of LP, which showed no benefits but was touted as effective anyway."

While I'm sure Crawey was a 'promoter' of PACE I don't think it's accurate to refer to her as a "researcher on PACE"?

Perhaps add a correction?
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Uh, always thought she was. But looking at what she was involved with, and it's basically all the other ones except FINE, based on the exact same ideas.

Close enough, I do agree with the general idea that calling her a researcher is a stretch, though. ;)
 
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