By David Tuller, DrPH
Professor Paul Garner, an infectious disease doctor at the Liverpool School of Tropical Medicine, has had a rough time with long-Covid. He has written about his experiences in a series of compelling blog posts on BMJ’s site. At first, he bonded with members of the ME/CFS community and expressed shock at the shoddy treatment these patients have experienced for years. He even invited me to give a presentation to his research group on the discredited PACE trial, which I was pleased to do.
This week—around nine months after he first contracted Covid-19–he reported in a new BMJ blog that he is fully recovered. Moreover, he claims to have recovered solely through the effect of positive thinking. Once he began believing he could get better and turned off all the negative messaging from other patients, he went to a military-style training exercise and felt great—in tip-top shape. And that was it. He was recovered.
It is uncomfortable to write critically about someone’s illness journey. But when a perceived expert posits his recovery story as a universal truth despite the lack of any scientific basis for doing so, and when he makes this claim in a major medical journal while implicitly criticizing those who haven’t gotten better, a response is imperative. (Just to add: This kerfuffle is making noise in the UK. In the US, no one will notice it or care, and it will have zero impact.)
We can all be pleased that someone suffering from long-Covid has reported improvements and perhaps full abatement of his troubling symptoms. But Professor Garner then takes the next step and implies that other long-Covid patients and those chronically sick with ME/CFS are losers if they cannot use their own very powerful and very manly thoughts to recover as he has. Not only that—these losers should be ignored because they keep complaining about their illness. What a downer! From Professor Garner’s perspective, such carping seems to have impeded his ability to achieve a full recovery—until he met other people who set him on the proper cognitive path.
What makes Professor Garner’s post particularly offensive is that he posits his recovery as being not only from long-Covid but from ME/CFS as well. Let’s be clear: Professor Garner seems to have had a rough time with post-viral illness, but by all evidence it was self-resolving, like the great majority of such cases. Or perhaps the generous advice Professor Garner received early on from ME/CFS patients about “pacing”—which he acknowledges he pursued obsessively—helped his body heal.
His apparent belief that his nine-month experience reflects poorly on the countless ME/CFS patients who have suffered through years of sickness is not warranted. It is also insulting. While Professor Garner reached out to members of the ME/CFS community for advice and counsel in the early stages of illness, he now appears to blame them for exacerbating his condition with their suggestions.
Given that his story is unsupported by the evidence from research on “recovery” from ME/CFS, his experience represents no more than his own experience. It’s a shame he wants to extrapolate his tale to apply to everyone, and that BMJ has enabled his efforts to do so. In short, BMJ has demonstrated how one man’s account of recovery from post-viral illness within a very normal time frame can induce smart people to make grandiose claims about the healing characteristics of the proper cognitions.
That approach has already been investigated in a “definitive” study among ME/CFS patients. It was called the PACE trial. And as has been widely acknowledged, PACE was a methodological and ethical disaster that ended up proving the opposite—changing thoughts and beliefs, at least through cognitive behavioral therapy, does not work for these patients.
Professor Garner’s post has attracted dozens of comments–65 at current count. They are well worth reading. I have posted two short ones below.
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From Geoff C:
This reads like a wildly irresponsible article. No one will begrudge the writer their improvement but to suffer for a grand total of 8 or 9 months to then declare that he has ‘disarmed’ ME/CFS shows a significant amount of ignorance and disdain for those individuals suffering year after year.
My wife has been ill for approximately 3 years, a good chunk of that being bedbound. We are 33 years old, in the prime of our lives, and being relegated to a subsistent existence because of an illness that is poorly diagnosed and even more poorly treated. If the magic bullet was a 6am boot camp class then you would not have hundred of thousands of people screaming out to be heard.
“I did this by listening to people that have recovered from CFS/ME, not people that are still unwell”
Would the writer recommend this research approach to other illnesses such as cancer/MS/Parkinson’s? Ignore those who are suffering and blame them for their own illness? Are their perspectives not valid or worthy until they have beaten their illness?
Again, I am glad that you have recovered from your condition and can return to work. I hope for your patient’s sake that it is in research and not dealing directly with patients. The stunning lack of empathy in this article is exactly the reason why those in the chronic illness community are terrified of the response they will receive from their own physicians.
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From Professor Jonathan Edwards of University College London
Dear Paul,
I am sorry but I think this is inexcusably unprofessional. I was going to make some comments but Geoff C makes them well.
You mention ‘I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious.’ This seems to be not only a ‘biomedical’ explanation of the sort you disparage but one with no evidence base whatever: pseudoscience, as you should be well aware. Your sources in Norway sound reminiscent of a group promoting a commercial procedure devised by an osteopath and rejected out of hand by NICE in the light of trial evidence.
Coming from someone supposed to be an expert on clinical evidence this is extraordinary. It is also deeply insulting, for reasons that others have made clear.
Comments
44 responses to “Professor Paul Garner’s BMJ Blog Post on His Powerful Cognitions”
Tell me, why should we believe him when he says he had a rough time?
He was swimming and hiking in Grenada in October, when many of us wouldn’t even manage packing a suitcase for a trip. So, when did he think he developed ME?
Were people allowed to travel to/from Grenada in October? It sounds jolly reckless. Wales was going into lockdown then and I couldn’t get to a rather important family do. I’d have thought that an epidemiologist should have set a better example.
On 19th May 2020 Paul Garner in one of his earlier BMJ Opinion Posts wrote: “I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long.” So what changed? Why become one of those whom you berate yourself?
I’d like to know what his employers think about this latest blog. Apart from coming across as crass, self obsessed and cruel his remarks are surely at odds, in a scientific sense, from the job he is paid to do? This is not ‘science-speak’ this is ‘I’ve drunk the BPS Kool-Aid’ nonsense. He’s made a professional fool of himself. I would be interested to hear feedback from anyone who might choose to contact his employers for their opinion on this matter. Surely they must have one? Surely they feel something about the embarrassment he has brought to the doors of their institution?
The “Norwegian PhD-candidate” he talks about in his story who offered (from the goodness of her heart, with no ulterior motives what so ever…) to help him out, is called Live Landmark. She’s been a very vocal and controversial advocate for the Lightning Process and the BPS-model for over 10 years in Norway now. She’s also the person who started Recovery Norway, along with a few other LP-practitioners and a doctor called Henrik Vogt.
Norwegians who have been following the debate and her for years recognized almost every single thought, phrase and line of reasoning in Paul Garners text. I am absolutely 100% certain this is her work. All the key points are taken straight from her ideology. (Recovery Norways slogan is “Listen to those who got well”, by the way.) She’s also notorious for making her “clients” go public, I think she somehow convinces them that this will make it more likely that they get healthy permanently, because then they can’t change their mind or something. Who knows, it’s a strange “logic”, but most of her clients seem to fall for it. Almost every single high profile client she has had has gone public afterwards talking about their miraculous recovery story and the “mental training” that helped them achieve it. She’s a former journalist, so she’s got the connections to make it happen with one single phone call to one of her former colleagues.
Live is really big on victim blaming (it’s seems to be a favorite hobby of hers), which we could see from this text that Mr. Garner has know also taken up. She’s controversial for claiming that people who don’t recover from LP are either “unmotivated” (code for lazy) or “neurotic” (code for crazy). She’s also actually said that she “hates the ME-diagnosis”, among other reasons because it gives patients the right to disability payments.
So, why does a PhD-student from Norway suddenly feel the urge to help out a doctor she doesn’t know from the UK? And why has she made him go public with a remission that is so “young”? After all it’s only a few weeks he’s been feeling better, nobody knows if it’s going to stick, or if he’s just going to relapse like most other people when they do LP? I think there are two main reasons why it’s so important for her to make him go public right now. Because there are some things going on at this very moment that could decide the Lightning Process’s future as a treatment modality, both in Norway and internationally:
1) She’s currently trying to get a study done on the Lightning Process in Norway. It’s currently undergoing approval of an ethical committee after the Norwegian ME Association have complained that it violates important methodological and ethical principles (which it absolutely does). She’s probably sent this anecdote to the ethical committee as a “case study” of how well it can work. The fact that he’s a doctor makes his words seem more trustworthy to a lot of people, and he’s also been very “high profile” with speaking out about it so publicly, so I’m sure it was a huge win for her to get this guy on the hook.
2) NICE is, as we all know, currently evaluating the guidelines for the future treatment of ME/CFS. They’ve said that LP might be listed under “do not offer”, and as a consequence the BPS-brigade and the LP-practitioners are now desperate to get good publicity regarding “the Process” to show the committee that “this works”. This “case study” has almost certainly been submitted to them already, or at the very least they know that the committee will notice it, being in Great Britain and all.
So to sum up – to me it really looks like Paul Garner has been used as a pawn in a game to create some positive buzz around LP, in a time when the treatment could be either A) gaining mainstream acceptance (at least in Norway) or B) be forced out into the cold, with other discarded treatments now viewed as quackery.
I can’t feel sorry for this guy and I question whether there was anything wrong with him in the first place. It may well have been a set up.
Thanks for a great blogpost. As a Norwegian I can confirm Charles information in the comment above. Unfortunately the ethical approval of the planned trial on the Lightning Process was maintained today (28/1/2021). https://melivet.com/2021/01/28/ethical-approval-of-lightning-process-study-is-maintained/
About Garners holidy, I believe he went to Grenada in November, as he was on the WHO Press Conference 30th October. A Norwegian paper shared the video, and his last words about Long Covid was: “It isn’t in the head.” https://www.dagbladet.no/nyheter/anna-20-har-vaert-coronasyk-i-200-dager/73013262
3 weeks later he was diving in Grenada, has posted photos on a public FB-page and written: “I needed the rest to be honest.” https://www.facebook.com/Dive.Grenada/posts/10157851173354053
Would also like to highlight that if he recovered from Long Covid in November, and suffered from denguefever a couple of months after he recovered (as mentioned in his BMJ-blog), he must have been on a pretty long vacation. And who knows? Maybe this has contributed to his recovery as well?
PS! Is it possible to hide my photo if you accept my comment?
If not, please change my name from Norwegian to Sissel. 🙂
Paul was on BBC breakfast TV with Dr Claire Gerada, telling his (and her) stories of recovery using gradual increases in exercise. People with long experience of media coverage of ME will understand the significance of this pairing.
Well said.
I have an email from Paul Garner telling me he didn’t have the problems that I‘d described about ME/CFS (definitely no Orthostatic Intolerance, and he didn’t have problems pushing through). He said was walking 5km a day.
I don’t know anyone with ME/CFS able to walk that far everyday! This is because Paul Garner was slowly but surely recovering from Post Viral Fatigue Syndrome (PVFS).
Improving doesn’t fit the criteria for ME/CFS, meaning he wasn’t “staring down the barrel of the ME/CFS” as he so heroically claims. And his mind did not have any super powers he thinks he has. His body healed from early rest intervention. Later of course exercise will help. It however won’t help those who have ME/CFS and may worsen subgroups of those with Long Covid who aren’t recovering.
The professor chucked science out the window. And he has preformed a form of mass malpractice with his advice in the BJM and BBC. Let’s not forget doctors who know very little about ME/CFS and Long Covid will be taking on his appalling mind therapy and exercise advice for their patients. Which will be disastrous for many
Fran Chris said:
“Paul was on BBC breakfast TV with Dr Claire Gerada”.
Paul and Clare do Breakfast together? Then all the more reason to suspect a set up, I’d say. The more I hear, the more I don’t buy any of it. I’m doubting if Gerada ever had covid now – we have no concrete evidence that she did. We’re taking all this on their say-so, but they don’t believe patients so why on earth should we believe them? What might their potential secondary gains be? Think about that.
Dear David,
Thank you so much for picking this up. I was shocked when I saw Prof Garner’s piece, initially hurt, then baffled and most recently we have been having a few laughs about it. Although it is easy to dismiss this as an n=1 example for us, my concern remains that despite the boundless evidence, it is exactly these kinds of stories that are picked up and promoted to the public. These types of stories form the popular narrative in this country and will no doubt be used to put pressure on NICE before the daft guidelines are made final. Apparently Prof Garner was on a big morning magazine show yesterday… As we know from the past, what happens here in the UK often ends up having wider implications for ME/CFS sufferers in other countries, like Australia, so although it would be preferable to swot this away like an annoying fly, my gut feeling is that we should keep an eye out for it causing unexpected trouble further down the line.
Why was Professor Garner given an M.E. diagnosis in Canada? Couldn’t he get a diagnosis in England?
Long covid sufferers frequently report recovery at around 9 months, why does he have to pretend he is different and has “slayed the ME beast”?
He reported only having fatigue – see here at 12.30 -https://www.youtube.com/watch?v=zTrIl52jV0s. If that was the case, couldn’t his fatigue problem have just been due to depression?
I’m concerned that people who have actual real organ damage caused by Covid will read his blog or see the publicity around this, and try to achieve what he achieved but will end up making themselves worse or even die as a result. Surely this was irresponsible of the BMJ to allow this blog post to be published without some sort of article explaining what he had done?
It says a lot about PG that he attributes his recovery to “positive thinking” instead of the benefits of convalescence and then a holiday in Granada.
People with ME have been recommending convalescence from viral illness for decades. Some people reported that the Caribbean sea was somewhere that they felt better in years ago when different places were discussed.
The sea water and diving may have helped as well.
There appears to be a need to blame someone though in PG’s written accounts. He really should be thanking the people with ME who reached out to him and encouraged the convalescence that got him to this point. If he picked up that the Caribbean was somewhere people felt better then he should acknowledge that.
I added this comment to Professor Garner’s article:
I am glad that Professor Garner has recovered from his illness, and I do hope that his recovery will be permanent. I am, however, concerned that he claims that his recovery from ME/CFS has been facilitated by basically saying to himself, ‘There’s nothing intrinsically wrong; my body was giving out false signals. I have suppressed them by thinking them away.’
I have had ME/CFS, contracted after a dose of flu, for 16 years. I, as with others with ME/CFS, have been subjected to a veritable barrage of such stories of miraculous cures, and, like the others whose health has never recovered or actually deteriorated further, mental persuasion has had no effect whatsoever. Not only are there a whole host of expensive private therapists offering this, but NHS treatment has been under the influence of what we ME/CFS cases cynically but accurately call the ‘all in your head’ school or the ‘Wesselyans’, after the psychiatrist Professor Simon Wessely, who, no doubt in good faith, decades back established this school of thought when the condition first came into view and nobody had a clue what it was.
Some people have recovered from what was diagnosed as, or what they thought was, ME/CFS; there is always the possibility that they had a condition with similar symptoms but from which recovery is possible. Recovery from ME/CFS is, however, depressingly low; full recovery is a tiny percentage, and mainly children; a fair recovery is rare; most people do not recover more than just a little, and the many deteriorate further.
The Corona Virus is a new phenomenon, the ‘long hauler’ is thus also a new phenomenon. There is so much that we have to learn about the long-term impact of the virus. That a large number of corona virus cases have resulted in their getting ME/CFS-type symptoms is not surprising to me, seeing what happened to myself and many other people with ME/CFS whom I know. It is possible that the ‘long haulers’, or some of them, have ME/CFS; it’s also possible that they, or some of them, have ME/CFS-type symptoms that are related to some other, maybe new, condition. A great deal of research will need to be done before anything concrete can be established.
In the meantime, I hope that Professor Garner’s recovery is complete and that he won’t suffer any relapse. But at a time when — finally! — the NICE has just issued revised draft guidelines on ME/CFS that propose a sharp break from the stranglehold of the Wesselyans, the last thing we with this debilitating condition require is somebody claiming that he’s cured his ME/CFS by thinking it away.
Following on from what CT observed above….
In the BMJ video that CT mentioned Garner seemed quite clear that he was only suffering from being very fatigued, including being muddled and not being able to read well. But in the new BMJ Blog “Paul Garner: on his recovery from long covid”, if I’ve read this right, he lists a whole host of other symptoms that he supposedly experienced, including tinnitus, painful calf, dizziness, breathlessness, arthritis in his hands, weird skin sensation and extreme emotions. It’s possible that he experienced these other symptoms during his first 2 post-covid months but, if so, why didn’t he mention them in the video, especially since he said that others had accused him of misrepresenting long-covid as only being fatigue? Also, I’m struggling to match up the time lines between his two accounts. What’s the truth here? Am I missing something?
If any ordinary patients (ie not eminent doctors but ‘the undeserving sick’) added a long list of symptoms to their history then we know where they’d most likely end up – labelled with somatization, catastrophizing or malingering. After all if we, as in people with ME, arrive at a medical appointment with more than one symptom we are told that (in accordance with BPS thinking) we must be presenting as one of those in the list I’ve just mentioned. I think we deserve an explanation from Garner as to why his accounts don’t appear to marry.
So now Dr Garner resents the advice sent to him, after he requested it. What an ingrate! Of course the advice included plenty that was useless, because his industry has spent 30 years burying the illness and spreading nonsense instead of doing proper research. Doh!
There is no fool like an old fool, and Dr Garner is going to learn that the hard way. I am sad for him because he can not see the outpouring of compassion from strangers he will never meet. He sees only cracks, not the light that gets in.
The last 50 years of Greed is Good has degenerated into a new Dark Ages as all our institutions decay from the inside out. And in spite of all the lies and mistrust, people still insist on working together in the spirit of mutual aid, in whatever small ways they are able to muster.
In the end this will be another own goal for the Wessely School. Since forever the main strategy of rulers has been Divide And Conquer. Over the years there has been plenty of division among patient advocates, usually over issues that ultimately will likely be irrelevant and forgotten. But nothing draws people together like an attack by a common enemy, and Dr Garner’s latest essay is such a blatant attack on *two* patient groups, that pretty much all advocates will put aside their grievances for a moment to mount a common defense.
I wonder what it is about the UK medical establishment that causes a steady production of high drama and public tomfoolery. It would be a bit entertaining, in a gossipy sort of way, if it were not so deadly…
Perhaps the bitterest rejoinder is that Covid effects may include frontal lobe disinhibition and loss of judgment.
look you can wax lyrical in all manners on this bloke and his comments BUT I have had m.e for 33 years my patience has been exhausted many years ago , suffice to say THIS MAN IS A FUCKWIT
I read Paul’s post I’ve emailed him, waiting for a response. Requested he take his post down and apologise. I’ve explained to the medical professional that what he had was post viral fatigue nothing more. I’d also like to know why he felt the need to insult 250 thousand ME sufferers and goodness only knows how many long COVID-19 sufferers
People like him are a disgrace, the damage he could do to so many sufferers is worrying but he will just continue climbing mountains oblivious to the carnage behind him
Thank you, Dr. Tuller, Geoff C. and Prof. Edwards. It’s no surprise Dr. Garner’s unscientific/anti-science proposition has found purchase in a BMJ blog as BMJ has done by far more than any other journal to retard and misrepresent the Science of ME. Par for the course.
What a lesson here: that even a doctor can become gullible to health hucksterism and fall into a religious stupor of belief in pseudoscience.
Either that, or the man has sustained some brain damage from SARS-2 CoV-19.
Bravo, David for your work in bringing this up.
The world owes ME/CFS patients a huge debt. Garner must pay for this.
I wouldn’t be too quick to dismiss this. I think it’s a great story of hope for recovery and completely consistent with the experience of many ME/CFS sufferers who have without question achieved terrific results, including complete cure following programmes like The Lightening Process, Gupta Amygdala Retraining, ANS Rewire or Annie Hopper’s DNRS. I’ve completed the LP and delved into all the others and had some great benefits – but they clearly aren’t a panacea. You need to have complete and unfaltering belief that you can cure yourself – and then set the mind on a path to recovery. That takes a huge amount of effort, determination and persistence – and I regret I keep slipping back into ‘waiting for medicine to find a cure’. But I’m not giving up! I know it may sound fanciful but the evidence speaks for itself that these methods can be a way out for some people. Maybe everybody can with the right support and training – maybe not – but it’s worth exploring some of these programmes to see if they resonate with you. There’s a lot of really good stuff in them and in the absence of any medical solutions they might just give you that inspiration of hope that there is a way out of this – or at the very least to look at your condition from a new perspective. But my big caveat would be that it’s not helpful to beat ourselves up too much about our ‘inability’ to overcome this thing. Great that some people have been able to and maybe we all could if we learned to apply the lessons better from those who have recovered – but we need to be kind to ourselves in the process. Good luck if you embark on that journey! (For the record I’ve been struggling with this one for 30+ years – triggered by Glandular Fever…but still planning a comeback before it’s all over!)
Maybe if people acknowledged the fact that one by default will claim to be cured after taking the LP, the hype will cease?
THANK YOU for this impassioned rebuttal of this doctor’s horseshit. I’m going on 11 months of long COVID. I received an ME/CFS diagnosis a few months back because if classic push/crash, PEM, unrefreshing sleep symptoms. I’m hoping of course that it’s PVFS and just taking a long time to resolve, but with every passing month I move a little further down the acceptance continuum. I am currently enrolled in two online ME/CFS self-management courses that are very helpful.
I want to bow down and honor those long suffering from ME for what you have endured – not just the debilitating symptoms, but the denial, gaslighting, and lack of research/treatment – and subsequently for what you’ve taught me, and Dr. Garner – even if he’s taken the best of what you’ve had to teach and then laughed at you as he’s merrily skipped away from an illness he never had. I believe you Brits would call him a wanker.
Yes, I’m from the U.S., and in spite of what was said here, some of us Americans ARE paying attention and are pissed off. But I get where this comment comes from – the U.S. has done more to dismiss and ignore ME/CFS than perhaps any other first-world country.
Thank you Martin Le Grice for the sincere comment.
Unfortunately there is no reliable evidence that shows LP and similar treatments have any positive effects, while there is plenty of evidence of harm. If medicine is expected to throw out the scientific method in favor of personal anecdotes, we will need much stronger evidence than the personal story of one eminent person.
As Beate says a couple of comments above: It’s not miraculous when people claim to be recovered after the Lightning Process. They are just doing exactly what they are told to do. They are told that they have to think that they’re healthy, live more like a healthy person and to say that they feel good if anybody asks. I think the line of reasoning behind this is something along the lines of “fake it ’till you make it”.
So there’s nothing surprising about somebody claiming to be cured after doing LP, it’s to be expected. Now, the interesting part will be to see how long he continues claiming to be cured. Most people figure out after a while that this is self-delusion and they just say fuck it and start being honest again. I hope Paul Garner will have the integrity to be as public about this as he was with his “recovery store”, when he reaches that point. If you’re reading this Paul – it’s never to late to be honest.
How do I know all this? How do you think? And all the people I’ve known that have taken it have felt the same. The Lightning Process is a load of crap, but there are new, desperate people who come down with ME/CFS every day, so there’s a steady stream of desperate sick people wanting to try anything, no matter how absurd, as long as they have some miniscule hope it might lead to recovery.
Problem is it doesn’t.
It’s really disappointing to hear this community expressing such anger and hostility towards practices which have helped many, many sufferers learn to cope with and manage their illness – and for some (I personally know 2) find complete remission after working hard to apply the lessons they learned. This is an extraordinarily complex illness and we know there is no one-size-fits-all – but if these programmes help just 10% of the people who embark on them – isn’t it better to support those decisions rather to slam them with vitriol and anger?? How can you disparage a treatment as ‘absurd and crap’ when some people derive huge benefit from it? Do you say the same about Rituximab or Ampligen because they only helped a small cohort or only helped ‘a bit’ without providing a complete cure? We are all desperate for answers but I can’t see any point in being closed to novel approaches. Keep an open mind I say…and keep the conversation positive so we can learn from each other.
Improving from a terrible bout with a virus can take a year. It just can. Maybe he just improved because that is what will happen to most people who get a post-viral illness. They will eventually improve. (Thank goodness.) Especially if they rest and de-stress their bodies. That is one of the most logical explanations for a recovery. So why did he not think of that in his essay? Why go the extra mile to trash the experiences of people with ME/CFS? My guess is it has to do with the stigma against us. To get back into the good graces of his work colleagues and bosses, maybe he had to go the extra mile to truly distance himself from ME/CFS. This BMJ blog post did that. Unequivocally. He could not have done more to sever his ties with the ME/CFS community than what he just did with this essay, and in this journal (BMJ). Mission accomplished. He can now say that he is nothing like ME/CFS, and he can now say he has nothing to do with our community. That sure makes it easier to get your old jobs back, old colleagues back, etc. You are nothing like THEM (those weak people who don’t know how to think positively).
Kill or cure is a risk not worth taking and, at a population level, harmful to society.
@ Martin Le Grice:
Let me answer that for you:
“This is an extraordinarily complex illness and we know there is no one-size-fits-all – but if these programmes help just 10% of the people who embark on them – isn’t it better to support those decisions rather to slam them with vitriol and anger??”
You don’t seem to grasp the concept of risk/reward in the context of medical treatments. If something only helps 10% a little, you should be pretty certain that it carries no significant risk to deem it a good idea to try. With LP the risk is huge. Have tried it myself. It’s notorious for causing huge relapses and sometimes leaving people way worse than they ever were before. I have seen many examples of this myself. The potential upside does not justify the risk with this “treatment”. Not at all.
“How can you disparage a treatment as ‘absurd and crap’ when some people derive huge benefit from it?”
Because I’ve tried it myself, and worked on applying the principles for over a year after the course – which left me worse than I ever was before. Have you tried it?
“We are all desperate for answers but I can’t see any point in being closed to novel approaches. Keep an open mind I say…and keep the conversation positive so we can learn from each other.”
While I do agree that it is wise to keep the general conversation positive, that shouldn’t stop us from calling out quackery when we see it. If bad treatments aren’t called out for what they are, more people loose their money, time and energy chasing dead ends like the Lightning Process. And potentially risk harming themselves even more in the process. Sure, let’s be open for the possibilty of healing or even complete remission, but let’s not be naive.
It’s precisely because I kept an open mind that I tried it. It didn’t work. In fact it took me from slightly fatigued but semi-functioning, to a state of being bed bound in severe pain. So openmindedness can be a double edged sword.
@Charles
I’m really sorry to hear you had that experience Charles and would be interesting to hear why you think it backfired on you. That is the insight which needs to be passed on for others to learn from. I suspect because it gave you a false sense of ‘I can do it’ so that you pushed yourself too far physically. That was certainly my experience (yes I also did the LP a few years after a friend of mine – who had been ill for a very long time – recovered completely within about 12 months). It gave me a renewed sense of optimism and I was able to build up to 30 mins walk on most days + started to do a few laps in the pool, occasional light weights even. And of course over-did it a few times and paid the price and then had to reassess. So for me it was not a ‘cure’ but I certainly derived a lot of benefit from the course content along with lessons from a range of similar programmes like Gupta’s Amygdala Retraining, Dan Neuffer’s ANS Rewire and Alex Howard’s Optimum Health Clinic. Learning techniques to calm the nervous system, interrupt negative thought patterns, practice visualisation of health, happiness, vitality etc.etc. can hardly be construed as high risk and have been very valuable for me – though I suspect I fall short on the discipline needed to get the most out of them that may be possible. I think the big problem is the way a lot of these programmes promote the belief that ‘complete cure’ is there for the taking which sets up yet another opportunity for let-down and disappointment. I’d like to see them reposition their language on that front. They do all have some really valuable content but there is no one-size-fits-all and ultimately we all have to navigate our own path through this. I think it’s a great shame to see so much negativity thrown at some of these programmes on FB groups and the like and would much rather see a positive discussion of what aspects have helped, what might be useful to others etc. Indeed much as I can understand the reaction to PGs blogpost – I think he makes a powerful point about trying to learn from others who have successfully found a way to recovery. And there is no shortage of testimonials from people who have been helped enormously by some of these programmes. So I think it’s a little unfair to call these programmes quackery. They are not purporting to be ‘treatments’ after all but offer training in some valuable skills for those who want to believe in exploring the power of the mind to heal. It’s not medicine but it has certainly helped me maintain a positive hope for the future most of the time…
As already mentioned, that people say they’ve been cured by a process that states they must tell people that it’s worked, in order for it to work, is not surprising.
Also, as highlighted by Professor Julia Newton’s work in Newcastle, the number of those misdiagnosed with CFS/ME referred from primary care to her specialist clinic, was extremely high – around 40%.
‘The main alternative diagnoses in these patients were fatigue associated with a chronic disease (47% of all alternative diagnoses); a primary sleep disorder (20%); psychological/psychiatric illnesses (15%, most commonly, depression, anxiety and post-traumatic stress disorder); and cardiovascular disorders (4%).’
A later study examining the prevalence of alternative diagnoses in patients referred by GPs to the specialist clinic at St Bartholomew’s Hospital, London, found:
‘that a diagnosis of “CFS” was eventually confirmed in only 54% of patients. Of the rest, 53 patients (21%) were given alternative medical diagnoses (most commonly primary sleep disorders, endocrine disorders, nutritional disorders and pain disorders), while 54 patients (22%) received alternative psychiatric diagnoses (most commonly a depressive illness or anxiety disorder).’
https://www.meresearch.org.uk/research/other-resources/misdiagnosis-on-a-grand-scale/
As we know, since these studies were published, nothing has changed regarding mainstream education of health professionals about the true nature of ME and the prevalent psychobabble around the illness and its diagnosis is likely to continue until something does change.
We know that a biomarker can’t come soon enough, but the education of health professionals would be a good start. The fact that those who have vested interests in maintaining the, now discredited, psychosocial theory of ME are at the very top of the U.K. medical establishment and have influence in this sphere is not going to make this easy.
Sadly, until then, we will continue to see people with a ‘diagnosis of ME’ making claims of miraculous recovery from this dreadful illness, whether from the Lightning Process or other woo-woo interventions, when the overriding probability is that they never had it in the first place.
@Martin:
Some of the aspects of LP don’t bother me at all. Learning to recognize negative thought patterns and redirecting focus onto something else e.g. is just common sense to me. Also positive visualizations can be a good tool to relax and get your mind on something else. I also use meditation (mindfulness and focusing on the breath going in and out of the nose) multiple times daily and I find them very helpful in making my rest more effective and well… restful. So I’m absolutely not against mindbody-techniques as a principle.
What I do find problematic with LP is the following:
– Teaching somebody that they are “doing” an illness instead of having it seems wrong ethically to me. I know it’s supposed to be empowering, it’s supposed to show people that they have “a choice”. But I feel it’s a form of pseudoscientific victim blaming, it’s something that gives the individual all of the responsibility for their healing and takes it off of medicine, society and the healthcare system. This is an approach that is very opposite to how almost all other illnesses are treated. And deep down inside this strikes me as a somewhat socialdarwinistic approach to illness. If you don’t “succeed” with the healing yourself you have only yourself to blame. Even though no treatment has been shown to be very effective or effective at all. So this seems both cynical and just plain wrong to me.
– I feel that they overpromise and underdeliver. When LP was first announced in Norway they claimed that 96% of the people got well from doing it. Which is pretty absurd now that we know more about it, but at the time a lot of people actually wanted to believe it so badly that they did. They got disappointed to say the least.
– The line of reasoning behind it that goes something along the lines of: “If you improve with the process, it’s because LP works. If you on the other hand get worse, it’s because you’re doing something wrong.” There’s a sort of assymmetry here, where the LP practitioners are very willing to take responsibility for any success, but they are very unwilling to take responsibility for any negative outcomes. This seems unethical to me. If you want to attribute positive change after an intervention to the intervention itself, you should also be willing to attribute negative change to it. There’s no such thing as a perfect method with no risk and only upside.
– It’s really expensive. It costs 17000 Norwegian Kroner where I live, which is about 2000 USD. That’s a lot of money for somebody who’s sick and often not working, at least not full time.
– When I took the process I was told that the “limitations where all in my head”. I could do anything that other people could do, don’t worry if things trigger your symptoms. And if you internalize this message there’s a fairly good chance that you might overdo it, and if you do this consistently over time, which you often do if you desperately want something to work, you could set yourself up for a real relapse. One that isn’t neccessarily easy to get out of. And if you do relapse from LP the practitioners will tell you that you did it wrong. But if so many people “do it wrong”, doesn’t that imply that maybe the method is very open to misinterpretation? If it was only one isolated incident of this I would agree that it might be me doing it wrong, but when you hear so many other stories about it it just doesn’t make sense.
There are also a lot of other things that irk me with “the Process”, but I don’t have the time and energy to go into it now, and this will probably be my last post here.
However, I do want to say that even though we might disagree on some things, you do sound like a great guy and I wish you luck in your journey towards better health! I do understand that it can be annoying when people are critical about something you believe in and really hope is going to work for you, so I do understand why you could interpret my previous replies as unconstructive and negative, even though I didn’t intend for them to be perceived that way. I just intended to warn people against what I feel was a really big mistake I made a few years ago. I really hope you find something that you feel help you with your ME/CFS, I just think there might be better places to look for it than with LP, at least based on my observations. 🙂
Martin Le Grice mentioned Rituximab. Careful trials demonstrated no effect. No one promotes Rituximab for ME anymore, if they have any integrity whatsoever. That is the scientific method: test the treatment carefully, and if it fails, move on.
When an individual recovers, no one can say for sure why that person improved. It might have been whatever treatment was tried, or not. Correlation Is Not Causation. The Wessely School ignores this repeatedly, and of course so do paid LP promoters. (I am not suggesting Martin Le Grice is a paid promoter.)
Here is my story of Correlation Is Not Causation: ten years ago I worked a few hours a week as a church custodian and grounds maintenance. I noticed that the day after every major winter storm I suffered a severe migraine. Without fail. This was very much a correlation. I assumed the cause of the migraines was the increase in barometric pressure, because that also happens after every winter storm.
Then I learned about PEM from a patient forum and how it is often delayed after exertion. And what was I doing the day before every after-storm migraine? Shoveling snow…
@Charles
Thanks for the follow up Charles and I think we are actually on the same (or similar) page. We must be as you graciously go on to see what I great guy I am 🙂 I think your response gives a much more rounded view of the LP in particular than the previous poster’s ‘absurd and crap’ summary – and that’s the sort of discussion I’m keen to encourage. Yes I agree with the many flaws and risks in the LP approach – but also want to acknowledge the many positive benefits. (Let’s not restrict it to the LP though as there are many good efforts going on under the other brands too.) Anything which can help people with ME should be lauded but it would be useful to have a forum where some more balanced analysis of strengths, weaknesses, risks etc can help others learn from our experiences. I get disheartened by the defensive and negative tone of so many posts about ‘anything which smacks of a psychological dimension to this condition’ and always want to weigh in with a counter-balance to keep an open mind on all these things. I continue to be influenced in a positive way every day by some aspect of the LP – but am also very hopeful that one of our brilliant research teams will soon crack the code to the metabolic/immune/mitochondrial/endocrine/neuro-inflammatory or whatever-it-turns-out-to-be root of this hideous condition. Best wishes to you too and let’s hope that science will provide some solutions before it’s too late this lifetime…
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Dr Garner’s vacation in Grenada seems to be the key to understanding his latest essay. The public record shows that the UK psychobabblers like to organize small conferences in warm seaside resorts. So I keep wondering who else was staying at the diving resort during Dr Garner’s vacation.
The BPS crowd must have much to discuss these days, like how to keep their sorry asses out of the witness box when the inevitable lawsuits are finally filed.
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GREAT POST!
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