Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Also part of the above initiative, this was flagged in 2005.
Edited as I disagree with part of the intro
'Martin Walker has just published his new book this week "Brave New World of Zero Risk".'

In the introduction he states:

“In the case of ME, the conflict involving science has grown over roughly the same period. A relatively small group of psychiatrists and psychologists has been determined to define ME first as an undiagnosed condition and then as a product of mental aberration or ‘false illness beliefs’. The groundwork for the assault on ME was laid in the late 1980s by the newly-formed Campaign Against Health Fraud (later called HealthWatch), ( SW and C Richmond..) ...... The exclusion of ME sufferers from the canon of allopathic medicine in Britain has shown all the signs of an operation carried out by powerful vested interests.9 In order to ensure that it is perceived as an illness without clear bio-medical causes, doctors and researchers have refused bio-physical testing to patients with suspecting ME, while supporting a complete moratorium on research funding for physical causes.10 Instead research money has gone to psychologists and psychiatrists predisposed to the view that ME, multiple chemical sensitivity and Gulf War syndrome are illnesses that the sufferers only have because they think they have them.”

 

Samuel Hahnemann

from Martin Walker's book

https://www.yumpu.com/en/document/read/40111067/cultural-dwarfs-and-junk-journalism-whale

Martin Walker - Cultural Dwarfs and Junk Journalism

 

I question the integrity of someone who talks about avoiding pessimism when public figures for natural recovery are known to be higher than 90%, which the patients, both ME and LC, fully acknowledge. Simply stating the facts as they are and dealing with reality is a far simpler solution than this overcomplicated mess built on denial. Somehow they are still trying to pretend we genuinely don't believe that recovery is possible, despite literally saying so, because it is a necessary assumption for their model. And of course because they can keep saying obviously absurd things and no one objects, the underlying problem being complete lack of accountability.

And speaking of the current fad over "mass hysteria" and "cultural illness", it's disappointing that few have pointed out the fact that ME has been completely discriminated for decades, a full generation of confrontational denial, and numbers are still rising, clearly debunking this big lie. It invalidates both assumptions: 1) it clearly does not encourage illness and 2) it did not eliminate or even reduce it.

 

Yep, I can understand that feeling.

It also shows how wrong Sharpe is about groups being pessimistic.

i feel like....can I be arsed fighting this B(P)S 'till the day I die then I log on here & spend some time hanging out with the members and think .... yeah, together we can do this. It won't be easy but I'm certainly not fighting alone.

 

me too. me too.
Me.Too

 

my bike and motorbike were the first things to go after i first got sick it was a full month before i could even make it to the job centre . the very nice lady in the job centre told me i could not claim unemployment benefit because i was obviously to sick to work . she then very kindly helped me fill in the necessary forms for sick benefits which she backdated to my first sicknote . certainly makes me wish for the days when the dwp staff were considerate human beings .

 

Just curious when that was?

 

1990.

 

Yep, that sounds about right

 

Charles Shepherd posted this on Facebook

"I did a 15 minute pre-record from home last week for the BBC. This explained in some detail the reasons why graded exercise makes people with ME/CFS worse and why we therefore recommend a period of convalescence in the immediate post infection period, which should be followed by very careful pacing of physical and cognitive activities after that. This information was omitted from the programme. This was a very unbalanced and disappointing programme in relation to the way that it covered what should have been a serious and informative discussion about activity and energy management in both Long covid and ME/CFS. Dr CS MEA"

It's hidden away in the comments on this post

Code:

https://www.facebook.com/meassociation/posts/3915479341843028

 

Wow, I wonder whether it’s been edited out by non-suspecting editors or the BPS lobby asked them to cut it out. Sorry if it sounds like a conspiracy.

 

Conspiracy just means that that more than one person works together for a common goal. It only became an insult when the CIA set out to fight researchers who felt that Oswald did not kill Kennedy on his own.

In the ME community we have reached the point where we need to be convinced that there is no agenda against us since that is the way it looks. It is not different from having an enquiry into why certain groups are more likely to get covid or good housing or whatever.

 

Bumped into a neighbour, a retired journalist, who worked at the BBC 20 odd years ago. They suggested that you complain directly to the BBC i.e. rather than another media outlet. If you complain to another media outlet then the BBC will simply respond "we have not received any complaints". His advice was that in my day there was a button on the website "complain*" - identify the program and summarise your concerns
*EDIT - https://www.bbc.co.uk/contact/complaints

The other thing which came up in conversation was the Westminster bubble - to me these folks has access to influential people --- BBC journalist in this case --- Government --- they hatch plans that they think work (PACE) and then scramble a defence --- "The Emperor's New Clothes".

I had a quick look for some of @Jonathan Edwards posts:


"The other interesting thing is that both the BACME info and a well known psychologist are falling over themselves to say - oh but of course we haven't been doing it like that for years anyway. We now have personalised treatment. The stuff in the PACE trial is no longer relevant so the fact that the evidence is low quality does not matter - we know what works.

A letter from Don Quixote, Sancho Panza and Rocinante it seems. (Take your pick.)
https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-45#post-331192

This is where IAPT trained psychologists can use their skills. If you are an overachiever they will be able to use their knowledge to see that your ME is due to overachieving. If you are a poorly educated unemployed layabout then they can use their skills to deduce that this is why you have ME. It is all about personalised assessment, nothing to do with those silly old published trials that treated everyone the same. I can assure you this is the case, one of them explained it to me.
https://www.s4me.info/threads/multiple-physical-symptoms-and-individual-characteristics-–-a-cross-sectional-study-of-the-general-population-2020-rasmussen-et-al.13644/#post-237272

This sounds to me to be following the same logic as the UCH poster presentation. It is being acknowledged that the evidence based for the standardised treatment regimens used in trials is weak. The response is to say that everyone needs personalised treatment. It would be common sense to personalise treatment in any situation, in terms of which symptoms were most troublesome, but that still requires an evidence base for the modalities you choose from.

I detect a backing themselves into a corner effect here.
https://www.s4me.info/threads/unrav...nt-2017-hauser-clauw-et-al.12453/#post-220177


Why I think this is so important is that Garner is putting across the real Cochrane values - a sort of evangelical hypocrisy. I have had it from Chalmers and from others indirectly. In a way I think Cochrane is at the root of all the problems for PWME. If Cochrane had been what it purported to be the BPS approach would never have got anywhere. Garner says he was in at the start of Cochrane. The mindset eventually becomes apparent. In essence it is anti-intellectualism - low tech and touchy feely rather than high tech and evidence based. But of course it appears to be the opposite.
https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-33#post-322586

The vultures are circling - and babbling as they fly.
https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-151#post-314441

 

Thanks for the transcript.

Bear in mind that NICE has been hung out to dry on this - as per the House of Commons debate.

A Government relies on the electorate and engaging in some nasty campaign against people who are ill (ME/CFS), appears to me to be a dodgy strategy.

OK they are, in my view, well connected but if you wish to get elected then aligning yourself with this seems to create risks.

 

Response to Newsnight item on treatment of long Covid
https://www.actionforme.org.uk/news/response-to-newsnight-item-on-treatment-of-long-covid/

Action for ME response FYI.


Having listened to this myself, I agree it is not neutral and is heavily biased towards expressing the stereotyped assumptions behind the GET premise as though they are fact, completely failing to grasp the import of the debunking of PACE and changes from NICE and only paying lip service to the need for discovery via the scientific method, which would be the appropriate emphasis.

The piece failed to challenge nebulous hyperbolic claims by GET proponents, thereby repeating the error of PACE.

It also abandoned a duty of balance and compassionate educational responsibility from a national broadcaster in favour of theatricality. Only a few dozen decades ago "clinicians" in maternity hospitals had no idea that washing hands was a good idea and killed thousands of women as a result. Current changes to hygiene awareness and PPE itself are thanks to science, not the bluff and bluster of clinical opinion. To present clinicians opinions favouring GET the way they did, without any critical context or reply, was an abandonment of science.

• I think lessons we can learn include that the hill of prejudice we are trying to climb is still there.
• Garner is trying bamboozle onlookers with illogic and paint the pro-science ME lobby as an anti-science cult, which we have seen before from other shills for the insurance lobby.
• I think it is reasonable to construe that the content of this program was largely spoon fed from the insurance lobby (as with Guardian content before the recent turnaround).
• For the editors, producers and presenters of this program, it was a travesty of their journalistic duty.

Scientific method has to be our priority but this deserves a thoroughly civilised and robust response from our appointed representatives. Good luck people I am way too close to crashing today, have got to stop.

 

Don't know whether it is useful, but I've done an edited version of the Newsnight transcript (thanks @Esther12 for extracting it):

 

Here's a first attempt at a complaint re BBC2 Newsnight program -hope there isn't a limit on the amount of text!


I wish to complain about the report on Long covid & ME/CFS - BBC2 Newsnight program on 9th April.

The program highlighted that:

“a very controversial part of medicine that is where the exercise programs with increasing intensity [Graded Exercise Therapy (GET)] plus psychological support [Cognitive Behavioural Therapy (CBT)] can act as a treatment that helps cure people with post-viral conditions draft official [NICE] guidelines don't recommend this but there's significant disagreement among scientists”.

A review of the current NICE Guidance on ME/CFS is underway [due to report in the autumn]. In effect there is no evidence to support the use of exercise (GET) and psychological interventions (CBT) in ME/CFS. In relation to Long covid, there have been no trials, and, as such, there is no evidence to support these interventions. The 2005 [PACE] study, referred to in the program, illustrates the problems typical of the studies used to support these interventions. The study was unblinded and used subject outcomes to evaluate the intervention. Participants were told that the treatment they were receiving was effective and then asked to fill in evaluation questionnaires - reminiscent of Sir Humphrey's advice on how to get the "right" answer from a survey! The objective data, required in the study protocol, was only collected for part of the study. Initially only the subjective outcome data was made public and this was used to support CBT & GET as effective treatments for ME/CFS. The study protocol, and the available objective data, was made available only after the Information Commissioner ruled that the data should be made available and a subsequent legal challenge, to prevent the release of the information, failed. The study protocol, and the available objective data, showed that someone, ill enough to be on the waiting list for a lung transplant, would meet the criteria to be deemed “recovered”.

Paul Garnier described how his recovery was due to graded exercise and “letting go of fear believing I would get better and knowing that I could control my symptoms myself”. There is no evidence that exercise (GET) and psychological interventions (CBT) work for Long covid or ME/CFS. The reporter should, at the very least, have highlighted that NICE are currently reviewing their guidance on ME/CFS and that they have downgraded the 2005 [PACE] study and other studies which had been used to support exercise (GET) and psychological interventions (CBT).

Regarding the reference to “personalized vitriol”. The 2005 [PACE] study was publicly funded (£5 million). The information commissioner required the study protocol, and the raw data, to be made available; the decision was challenged in the Courts and the Court upheld the commissioner’s decision. These comments about “personalized vitriol” look like convenient deflection i.e. when the real issue was the flawed 2005 [PACE] study - a study where someone ill enough to be on the waiting list for a lung transplant would meet the criteria to be deemed “recovered”. Why was there no analysis of whether there was remarkable “personalized vitriol” or whether this might simply be an attempt to defend the indefensible 2005 [PACE] study?

“important that research in post-viral syndromes is not shut down and it's not shut down by adverse advocacy groups that believe that the disease is permanent”

This comment is inaccurate and offensive. Typically those who suffer from ME/CFS are women who often become ill as teenagers; recovery is the exception. Many family members, and sufferers, financially contribute to research charities and/or lobby for public funding for research. The UK genome-wide association study (GWAS) of ME/CFS has been strongly supported by the patient community and advocacy groups. Many of us hope that Long covid will increase funding and that progress will be made to understand and treat Long covid and ME/CFS. The 2005 [PACE] study used evaluation criteria which meant that someone ill enough to be on the waiting list for a lung transplant would meet the criteria to be deemed “recovered”. Objecting to the 2005 [PACE] study is not about objecting to research it is about objecting to flawed research. We were treated to an individual testimonial “letting go of fear” and assured that like Lazarus/Paul Garnier you will recover; allowing those views to be broadcast unchallenged, is not appropriate. If the 2005 [PACE] study teaches us nothing else, it teaches us that we need research that is properly conducted (including evaluation).

“Sally Singh --- now running a long covey clinic and a small cohort of people have now been treated the program includes extensive clinical evaluation and rehab and there are signs that exercise programs may be helping we found that their exercise capacity improved significantly as did their fatigue and what was interesting was a number of people that came into the program we're actually scoring quite highly on our fatigue scores so we were really encouraged one that”

The question here is whether the study was blinded and, if not, whether objective evaluation criteria were used (actometers). We’ve been down the road of poor quality studies - unblinded and with subjective outcome indicators - the 2005 [PACE] study.

I understand that the journalist Deborah Cohen is/has been “an editor of The BMJ (British Medical Journal) for thirteen years”. Perhaps the real issue here is that she is too close to those who benefit from CBT, & GET. These are lucrative “treatments” with no obvious alternative; therefore, their use is defended i.e. despite the absence of evidence that they are effective in Longcovid or ME/CFS. The difficult questions about the use of CBT & GET [or their thinly veiled replacements] in Long covid and ME/CFS were not asked.

In my view the program fell well short of the standards I would expect from the BBC.

 

Don't know whether anyone else has mentioned, but a few things about the Sally Singh et al study (BMJ Open 2020) https://bmjopen.bmj.com/content/10/12/e040213
Re: "Apparently nearly 90% of doctors involved in managing Long Covid patients believe that an exercise programme is an important part of the recovery programme."

That study was a survey of >1000 HCPs that was done in April 2020 about the potential long-term effects of hospitalisation (including admission to ICU) in those with severe COVID. Most would not have known about the existence of Long Covid at that time - so it's opinion based on post-ICU rehab practice.