Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

[Nicolas the french guy]

A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Article by Buzzfeed journalist Tom Chivers about the SMILE trial and the surrounding controversy

The author talked to Parker, Crawley, Tuller, Edwards, an unnamed PACE author, and people who have gone through the "process".

"Less than a year later, she began the Lightning Process, a private three-day course costing several hundred or sometimes thousands of pounds. Its practitioners are keen to say it's not a treatment but a training, and – in some cases – it has apparently removed the symptoms of CFS/ME altogether. More than 20,000 people have used it worldwide, according to its practitioners."

"The Lightning Process was developed by a British man, Phil Parker, in the late 1990s. Parker is a former osteopath and hypnotherapist who was once a teacher on a course that claimed to teach people how to heal illnesses using spirit guides and tarot cards, but who is now doing a PhD in health psychology.

The process, or its practitioners, have made some dramatic claims about its effectiveness. At least one practitioner’s website used to say that it could “help you to completely recover permanently" from CFS/ME with “no possibility of relapse”, and that patients can “achieve full recovery no matter how severe your symptoms are”. Those claims are now gone but are visible on web.archive.org, and were recorded at the time by the charity Invest in ME.

Parker’s own websites apparently used to make similar claims. According to the charity 25% ME Group, Parker’s website once said the Lightning Process allowed patients “to automatically, easily and effectively stop those thought patterns” that he said were “always present” in ME. And lightningprocess.co.uk, which was described as Parker’s personal website, said it contained “stories of those who inspired me with how they used the mind body connection to get over ME/CFS, MS, Depression, Anxiety, Chronic Pain and Eating Disorders and much more”.

However, none of these claims are still available on the internet. The Advertising Standards Agency (ASA) issued two rulings against Parker and his companies in 2012 and 2013, saying his websites gave the misleading impression that the Lightning Process could cure or treat CFS/ME and other conditions. Other Lightning Process practitioners have changed the claims on their websites following complaints to the ASA – the most recent was just last month – that the ASA either upheld or resolved informally. Parker told BuzzFeed News the claims on his websites were “quite reasonable – we think the Lightning Process may help some people with chronic fatigue, some of the time”, and said it was based on a survey of patients that found that 81.3% of patients had improved, and anecdotal stories."

"But far from ending debate about the secretive therapy, the trial inflamed it. Not one of the CFS/ME charities – Action for ME, the ME Association, the 25% ME Group, ME Research UK, and Invest in ME – BuzzFeed News has spoken to welcomed its findings; they were all deeply wary. Several experts expressed profound concern over how the trial was conducted.

BuzzFeed News spoke to the researcher behind the trial – who says she has had death threats as a result – and five people who have used the Lightning Process. Their experiences of it differed dramatically."

"The routine involves putting mats on the floor, each with circles drawn on them. “One had STOP written on it,” said Joan McParland, a Northern Irish woman and founder of Hope 4 ME & Fibro NI, a charity for sufferers of CFS/ME and fibromyalgia. “And you say out loud, ‘Stop, you have a choice.’ And the next one says CHOICE, so you move off STOP on to CHOICE.

“And then there are two circles in front of you: THE PIT and THE LIFE YOU LOVE. So obviously you choose THE LIFE YOU LOVE.”"

 

[Londinium]

This is an excellent article. The author has taken the time to speak to both sides and the end result, IMHO, is utterly damning.

 

[Cheshire]

Dorothy Bishop, a professor of developmental neuropsychology at the University of Oxford, told BuzzFeed News she was also concerned about the “wisdom of running a trial [into something] that doesn’t seem to have much scientific basis and is commercial, because if you find a result you end up giving huge kudos to something that may not deserve it”.

“I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,” she said, but she was concerned about a “a mega-placebo effect”.

When your best allies can't support you any longer

 

[BurnA]

This is an excellent article. The author has taken the time to speak to both sides and the end result, IMHO, is utterly damning.

It's particular good because of the explanation @Jonathan Edwards gives regarding subjective outcomes and blinding. I'm glad the journalist kept all that in the article.
Also nice that they left in this bit about PACE :

He claims the SMILE trial’s results also undermine the PACE trial – which also used an unblinded trial with subjective outcomes – by showing that "the same techniques can get you the same answer for a completely quack therapy based on complete nonsense like standing on pieces of paper and telling your disease to stop”.

 

[Hoopoe]

When your best allies can't support you any longer

I propose that from now on we use the term "mega placebo therapy" to refer to LP.

 

[guest001]

When your best allies can't support you any longer

Woman speak with forked tongue if you ask me. Realises the whole shebang is worthless tripe but doesn't want to bite the BPS hands she has shaken... rather cowardly in my eyes.

 

[guest001]

I propose that from now on we use the term "mega placebo therapy" to refer to LP.

Lol 'MPT' ... only missing a 'u', a 'p', an 'e' and an 's'

 

[Alvin]

I am reminded of someone who said if Republicans claimed the earth is flat the media would report it as, Is the earth flat or round, both sides have a point.

 

[Sean]

A pretty fair article. I don't envy the author's task.

Even the methods of the recent scientific trial do not describe what it involves.

How the feck did this get past peer-review? If this alone isn't a ear-splitting warning bell to the medical scientific community, then what the hell is?

As well as the process itself, patients are told about the theoretical basis of the process. The idea is that the brain’s “fight or flight” response – the “physical emergency response” or PER, as the Lightning Process website describes it – becomes hyperactive, causing it to release too much adrenaline and interfere with the immune system.

Well that is objectively testable. So did they test it? Nope.

Interesting how closely the acronym PER resembles PEM.

The Lightning Process, according to its promotional material, teaches you “how to spot when the PER is happening and how you can calm this response down, allowing your body to re-balance itself”.

Is that the same as using magic crystals to realign your chakras to the cosmic vibe?

Just asking.

Parker said Lightning Process practitioners do work with people who have MS, but that they don’t claim it works for everyone. “If you have MS and are wondering whether the Lightning Process can fix it, I would say, ‘Well, we’ve had some success in the past, but also some people have had no change whatsoever.’ So maybe there’s something going on here, but there’s no guarantee it will make a difference.”

You low dog.

The Lightning Process, [Michael] said, turned him around, almost immediately. “It made me better,” he told BuzzFeed News. “Better than I was before.” He had suffered from depression and anxiety before being struck down with CFS/ME; now his depression is gone and his anxiety, he said, is “minimal”.

So ME is now defined as depression and anxiety?

Crawley told BuzzFeed News it was possible that there was some placebo effect involved, but that the questionnaires she used in the trial asked questions about how far you can walk...

Any special reason you couldn't have used an objective measure for that, like actometers?

I think we all know that answer to that.

In audio of the Q&As of another talk, heard by BuzzFeed News, Tuller asks her how he had libelled her and Crawley can be heard telling him he had been “unbelievably defamatory and unprofessional”. Crawley declined to talk about the issue when asked by BuzzFeed News.

Because she is a lying coward who will not (willingly) face proper scrutiny and accountability.

Bristol said it didn’t feel it was appropriate to comment on this.

Because they are lying cowards who will not (willingly) face proper scrutiny and accountability.

Parker said the Lightning Process has had success with many people who have been sick for years, some of whom are tube-fed and bedridden.

So submit the results to a high ranking peer-reviewed medical journal, though not the Lancet or any other journal that published a PACE paper, because clearly their technical and ethical standards are in the sewer.

 

[large donner]

“I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,” she said,

So fuck the patients and just let her get on with it "cos she trying"?

but she was concerned about a “a mega-placebo effect"

I wonder what definition of the placebo effect she is using here. Its so easy for quacks to come out with the old, "as long as it helps the patient recover who cares if its a placebo".

In my opinion that's the cowards way out of an issue like this because it doesn't get into the nitty gritty that no one recovers but some people may just give favorable answers on questionnaires out of loyalty, persuasion or a belief that answering positively to a questionnaire will somehow make them better because they have been told that's how the "treatment" works.

It also doesn't bother to examine the data, the methods and the change of protocols midway through the trial, swapping objective measures for subjective ones.

 

[Robert 1973]

“I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,” she said, but she was concerned about a “a mega-placebo effect”.

Love the use of the word mega. It’s like she was trying to think of words to describe a completely shambolic research project and somehow MEGA just popped into her mind! Yes, SMILE combines placebo with all the mess and muddled thinking that is associated with the CMRC’s MEGA shambles.

But let’s not be too harsh on Esther. She may be totally incompetent, but she is doing her best. Sadly, I fear that may be true.

 

[large donner]

But let’s not be too harsh on Esther. She may be totally incompetent, but she is doing her best. Sadly, I fear that may be true.

This is the whole point. When an ignoramus rises to the top there is supposed to be layers and layers of self correction to stop them continuing, infact it should happen as they attempt to get there in the process as it happens. But as in so many things in our societies this is proof that all of our systems are broken.

The peer review system is broken, journalism is broken, the education system is broken, politics is broken the public health system is broken.

There are just layers and layers of people sitting on their arses not doing their jobs properly just allowing megalomaniacs to rise to the top.

 

[Sean]

Damn right, @large donner. Virtually every institution and process responsible for quality control in this area has failed.

 

[Indigophoton]

It appears that people do recover using the LP, (irrespective of this trial's findings), hence the enduring interest in it, and the puzzle. The problem is, it's just not clear what they're recovering from.

If all that was needed to recover from ME was a change of thought we'd be laughing - we could all do that very easily, and be well.

I met an LP practitioner years ago, who told me that she thought she could give herself ME if she "thought the thoughts you do". In response, I told her there was some evidence of a genetic component to the disease - the most unarguable biology I could think of on the spot - and she was genuinely shocked, and couldn't reconcile it.

Although clearly unethical, it would make the ultimate test of the LP if a healthy practitioner was able to think themselves into ME (assuming we had a diagnostic measure).

Of course it's not really that risky, as they could promptly think themselves out of it again, after the experiment...

 

[Invisible Woman]

Damn right, @large donner. Virtually every institution and process responsible for quality control in this area has failed.

.... & failed so spectacularly that one could be forgiven for wondering if it had failed at all or if there were ulterior motives at work.....

 

[Wonko]

People keep forgetting the old adage which goes something like this - if you're any good at your job you'll be promoted - which logically means that everyone in a job for longer than 2 promotion cycles is no good, useless, totally incompetent in fact, and that by definition everyone in the top jobs is useless.

Whilst it's clearly rubbish, just because I've been doing the same "job" for 30 years and haven't been promoted doesn't mean......lol, it does provide a nice simple, non conspiratorial way of explaining, well, lots of things.....

 

[Rick Sanchez]

I feel like this is actually the most well written coverage of SMILE / PACE from a news site so far.

By covering both sides of the debate, the article actually manages to make Crawley and Bristol come off as uniquely inept.

Tuller says this is an attempt to shut down academic freedom to criticise other researchers’ work. Edwards, a former colleague of Crawley’s, told BuzzFeed News the letter “raises serious concerns about the probity of the University of Bristol”. Bristol said it didn’t feel it was appropriate to comment on this.

A freedom of information request by the TYMES Trust revealed that Bristol didn't have any records of harassment against Crawley, although the university stressed that it was aware of such harassment and the lack of records simply reflected that it didn't have a process for recording it.

Mega awkward

Although the author does his best to remain neutral, I feel like the ending gives away his point of view on the debate.

Waterhouse said her “whole life has changed” as a result of her illness; she said she is still single because of it, and hasn’t worked for two years, since having a “massive crash” after trying to set up her own business. Not only did the process not help her, she considers it to be cruel.

“I just think it’s really unfair,” she said. “Telling people who have a debilitating condition such as ME that it’s all in our minds, and that we should try harder. I’m the last person in the world who should try harder. That’s where it’s totally wrong.”

 

[guest001]

Love the use of the word mega. It’s like she was trying to think of words to describe a completely shambolic research project and somehow MEGA just popped into her mind! Yes, SMILE combines placebo with all the mess and muddled thinking that is associated with the CMRC’s MEGA shambles.

But let’s not be too harsh on Esther. She may be totally incompetent, but she is doing her best. Sadly, I fear that may be true.

And let's not forget OMEGA I think it fulfilled its intention

https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

[guest001]

The peer review system is broken, journalism is broken, the education system is broken, politics is broken the public health system is broken.

Ethics approval is very broken... especially in the South West (not Essex afaik ).

 

[Daisymay]

Quote: "Dorothy Bishop, a professor of developmental neuropsychology at the University of Oxford, told BuzzFeed News she was also concerned about the “wisdom of running a trial [into something] that doesn’t seem to have much scientific basis and is commercial, because if you find a result you end up giving huge kudos to something that may not deserve it”.

“I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,” she said, but she was concerned about a “a mega-placebo effect”. End quote

I find this comment from Professor Bishop deeply depressing and shocking.

For goodness sake Professor Bishop, the safety and care of children with ME takes precedence over the career and feelings of any scientist. If the research is seriously flawed, "mega-placebo effect", speak out to the powers that be, not some mere comment in Buzzfeed. That's not good enough.

You're an Oxford professor, you have a duty to protect the children, not Professor Crawley and not yourself!

I despair of the scientific and moral standards of science in the UK.