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

It's funny you say that as I am not known for my optimism! But yes, I do think plenty of people are capable of listening to a programme and getting the message. I don't think much, if any, critical thinking is required in this case - the reporter has done that job and presented it in such a way that the reporter's message on LP for long COVID is clear. (I appreciate that some think it was too open, happy to agree to disagree on that.) What the audience will take from it is just speculation, whether that's me or you speculating, and we've no way of knowing the truth. Your point that the public view of ME is grim is well taken. Much of that will have transferred to long COVID, and will inform how some people who hear the programme react to it. And yes, the positivity/hope brigade is always there. But you could think long COVID is nonsense, and still listen to this programme and go, that's a swindle.

I also think it's possible that a larger proportion of the public are sympathetic to those with long COVID than to those with ME/CFS/PVFS. Quite a lot of people got hammered with a hefty enough dose of COVID that they got a bit of respect for the virus.

 

A rather over excitable Jennifer Mann demonstrating that her recent Telegraph interview ('I cured my CFS with my powerful mind') wasn't at all about promoting her new mind body cure book and very expensive coaching courses .....
Oooh Nooo, of course it wasn't.

https://www.instagram.com/iamjenmann/reel/C6YbI6YBojz/

You don't have to be an Instagram member to view this, but if you do, turn your volume right down.

 

I didn't really see that as the weak point, David.

I was disappointed that Rachel Schraer did not seem to understand when I said that LP made people with ME/CFS feel worthless. It sort of went like water off a duck's back. She didn't seem to see the human side of the problem.

I have no proof that LP made anyone physically worse but I have very clear evidence that a lot of people found it very emotionally traumatic. Since the idea of LP is to sort out thoughts, it is clearly worse than useless on its own terms. Most people who try it will feel conned, humiliated and worthless. That didn't seem to register.

 

Meant to also say, I think the general public does not like being made a fool of (eg by being made jump around on a piece of paper), and does not like being ripped off (eg by paying £1000 for the pleasure, and not getting better), and those two things came across in the report.

 

@Jonathan Edwards wrote:
'I have no proof that LP made anyone physically worse ...'


Here are 40 accounts of people with ME doing Lightning in Norway. Like others in the UK some state that Lightning encouraged them to go beyond their limits of activity, that their illness did deteriorate physically, as well as being damaged psychologically.

Example:
'I know of many who say that they have had major psychological problems after the course when they didn’t recover, and even more who have experienced a severe deterioration in general of all the symptoms of the disease. Some even have gone from being able to move around to becoming in need of being nursed.'

Link to the stories, in English:
https://lp-fortellinger.no/en/2022/02/24/venke-midtlien-2/




https://twitter.com/user/status/1794068821633814696



Tweet content:
'Here are some 40 heartbreaking stories from ME sufferers who have experienced LP themselves:'

.

 

I don't doubt that people think they were made worse by LP but I don't have proof.
Simply because we have no physical proof of anything going on in ME/CFS.
You might say we have no proof of people being humiliated but the link there is easier to be sure of. It doesn't really make sense for it to be 'coincidence' for instance.

I am not doubting people get worse but I was not in a position to say to journalists that we have proof that people get worse due to LP.

 

Jonathan Edwards: 'I was not in a position to say to journalists that we have proof that people get worse due to LP.'

You didn't actually have to use the word 'proof'. You could say that numbers report becoming much more physically sick after doing Lightning. It doesn't make sense to accept that people with ME should try to stay within their activity limits, and pace, but not accept it when pwme who've done Lightning, which encouraged them to disregard their activity limits and ignore pacing, became more sick as a result of ignoring their activity limits, and dropping pacing.

You have no 'proof' that people were humiliated. You just accept what they say about humiliation, but don't accept when people with ME say they became more physically sick after doing Lightning.

 

Yes, and it's part of the problem reporters have. Stories about harm are as anecdotal as those of improvement, and (unless there's a well founded suspicion of vested interests) it's difficult for a neutral voice to accept one set of testimonies whilst denying another.

Luckily common sense and plausibility can do a lot of work when the issues are set out well.

 

But I personally do not have any special evidence about any of that. About the pacing either.
I think I do have proof people felt humiliated - because it is not credible for there to be a coincidence with humiliation whereas there is for 'physical worsening'.

I have to be very careful to stick to what I know. The whole problem with these quack treatments, whether LP or GET, is that they are justified by phoney evidence. I need to make sure I cannot be seen to be doing the same.

 

Agree.

We know that spontaneous deterioration, or deterioration for reasons other than LP, can happen in ME/CFS - for example, at 12 weeks, 25% of people in the control group of the GETSET trial reported physical function scores 10 or more points lower than their baseline score. So something similar is likely in long COVID. But people don't spontaneously become humiliated.

 

This is always a good question to ask journalists.

 

I don't know if it's a "weak point," but it's just a fact of life of how journalism works. I also made lots of points to Rachel Shraer in our informal meeting at the BBC that didn't make it into the piece. It is just unrealistic to expect a young journalist in her position working at a major news organization like the BBC to be in a position to take a 100% perspective against the LP--however deserved it might be. The mainstream news format has real constraints.

 

This is from the MEA's 2010 survey (full survey here https://meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf). The far right column shows the percentage who say their symptoms were worse after various therapies. The LP is in the middle of the list at 21% worse, far below GET at 57%, and pretty much the same as CBT at 20% worse, much higher than pacing at 5% worse and bringing up the rear is meditation/relaxation at 2% worse.

 

More from the MEA's 2010 survey, this time about acceptability (full survey here https://meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf).

 

This has certainly been an interesting discusison. Thanks to everyone for your thoughts on this. it reminds me of lots of the struggles I would have when working full-time as a reporter. These kinds of issues are under discussion constantly in newsrooms--what sources to use, how to find them, how to identify them, how much "balance" is required for a particular story, what evidence is enough to make a point, etc.

 

Jonathan Edwards wrote: 'I have to be very careful to stick to what I know. The whole problem with these quack treatments, whether LP or GET, is that they are justified by phoney evidence. I need to make sure I cannot be seen to be doing the same.'


But with GET, patient accounts of improvement and accounts of harms, adverse effects, are not held as equal. Surely accounts of harms are given more weight.

Equating the credibility of accounts of improvement/recovery from doing Lightning with the credibility of accounts of deteriorating health from doing Lightning surely ignores the central issue of Lightning Training - that Lightning participants are told to both self talk, and tell others, that they are well/recovered and discouraged from stating they are sick, in pain, etc. Surely that changes the balance of credibility.

.

 

Goes for all the quack treatments. My stay at het Roessingh costed 15.000 euro's for a course of CBT/GET of 5 or 6 weeks on and off. We were with a group of 6. That's 90.000 euro's. Just for that group. Then there was the kids group that raked in even more. A FM group with the same model. And these groups ran almost year-round. I think they did 6 or 7 groups every year for the course I was in.

That's more than 1.5 million a year down the drain for a relatively small group of patients. Then there were other centers offering the same, and others still that offered different sized courses. Must've been well over 10 million a year spent on pure quackery on the ME side alone in NL. And that went on for years. I followed the course in 2005 and it had already been in place for years by then, if the money that was put in that BS had been spent on actual solid science....

 

The point I am making has nothing to do with overall credibility. It is a matter of what I was entitled to claim as an outside observer being interviewed by journalists. The journalists already had a first hand story of people reporting being worse after LP. I could not add anything to that. But I thought it was important to add that people felt humiliated and worthless because of their failure to cure themselves. That seems to me particularly relevant to the children in the SMILE trial.

It is interesting that the MEA figures, which I would not put any great weight on but at least show some comparisons, show about as many saying they felt a lot better as felt worse but that LP scored highly on being unacceptable. Even if yo don't get worse it is humiliating it seems.

 

https://en.wikipedia.org/wiki/The_Lightning_Process