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

[Simon M]

If only they had interviewed a patient with severe ME/CFS who tried GET/CBT only to get worse afterwards. What a different episode it would have been.

I think this is the central journalistic flaw and why it was a fundamentally biased piece.

Of course, case studies and interviews are a really powerful way to communicate. But if you're going to tackle controversial area you need a case study from both sides. Instead they started with Paul Garner, and closed with his quote that "it just doesn't fit the biomedical model".

 

[SallyC]

If only they had interviewed a patient with severe ME/CFS who tried GET/CBT only to get worse afterwards. What a different episode it would have been.

Exactly. A clip of Emma Shorter's powerful testimony would make an enormous difference to the tone of the piece.

 

[Andy]

Action for ME: Response to Newsnight item on treatment of long Covid

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

 

[Robert 1973]

Action for ME: Response to Newsnight item on treatment of long Covid

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

I've never been shy of criticising AfME in the past but they have really raised their game recently.

What really upsets me about news stories like the one on Newsnight is how it affects the way I am treated by people who know me. It pains me to think of friends and family saying "Did you see Newsnight last night?" etc.

It seems like a very poor piece and not in the normal newnight style of challenging those making claims. I notice the journalist who did the piece used to work at the BMJ so I suspect a large amout of bias there.

Yes, exactly the same with BBC Today Programme when they've had BPS enthusiasts on. I recall the Newsnight journalist in question doing another piece on Covid which featured Sir SW and Dame CG. I can't remember what they were babbling on about but raised my concerned about her connections.

 

[Invisible Woman]

I was told that the majority of people who develop ME and will recover do so within the first year.

So, even if we ignore the fact that Garner doesn't seem to have experienced the post exertion difficulties (particularly with aerobic exercise) that is the hallmark of ME, he was well within the spontaneous recovery period anyway. So he had an excellent chance of recovery without any treatment at all.

This makes claims that his approach "cured" him even more questionable.

Something that's being glossed over.

 

[Amw66]

Not giving up on potential uses for those specialist clinics and treatments easily are they ?

 

[Esther12]

https://gofile.io/d/714kGv

Thanks Adam.

This seemed like a pretty well done piece of propaganda that will be viewed by a lot of people.

Auto-transcript:

Transcript

now how do you treat long covered it


sounds like an innocuous enough


question but in fact it's one that goes


to the heart of some of medicine's most


controversial territory


that's because it butts up against how


we treat chronic fatigue syndrome or me


and this has long been a source of huge


disagreement tomorrow a cross-party


group of 65


mps and peers have written to the prime


minister urging him to take into account


the untold human suffering caused by


long covert


and to factor the risk of the condition


into government's plans to lift


restriction


here's a health correspondent deb cohen


a year ago professor paul garner wasn't


doing this


he was hit badly by covid he works as an


infectious diseases specialist


but it was his personal battle he found


himself talking about in the media


as he campaigned for long covid also


known as postcovid syndrome


to be taken seriously it came back and


hit me


over the head like a cricket bat


floor me completely floored me it made


my head


foggy it interfered with my speech i


mean it just


did so many things that were just so


unpredictable and quite frightening


even for somebody that's fairly tough so


what is long covered


long coved isn't one condition one


official definition of


post covid syndrome are symptoms that


can't be explained by something else


12 or more weeks after having had


covered


symptoms can include things like fatigue


brain fog


headache and breathlessness and


different studies come up with different


estimates


about how many people have it


there is no dispute that after a major


illness patients need time to convalesce


some are left with tissue damage there


is research into who these people


are and how to detect them it is how


professor garner describes his recovery


that has sparked huge controversy that


recovery began by riding his bike


slowly around liverpool sefton park for


about 20 minutes


and then gradually increasing it so how


did you go


from being quite debilitated with


your symptoms postcovid to being able to


cycle up a hill like that


letting go of fear believing i would get


better


and knowing that i could control my


symptoms myself


good for him you may say but paul's


views on how he overcame the chronic


fatigue that he felt post-covid


plays into a very controversial part of


medicine


that is where the exercise programs with


increasing intensity


plus psychological support can act as a


treatment that helps cure people with


post-viral conditions


draft official guidelines don't


recommend this


but there's significant disagreement


among scientists


what isn't disputed is that like me in


chronic fatigue syndrome


symptoms of long-covered include fatigue


tiredness after exertion


and brain fog but the question of how to


treat it


is early on during his recovery from


covert


professor garner's writings chimed with


many with long-term me


he wrote i am reading materials about


pacing


and cfsme and listening to the cfsme


community


i'm taken aback that doctors have been


so dismissive of what these patients


have been saying for so long


however in january this year he struck a


very different tone writing


i feel that i have looked down the


barrel of the me cfs gun and disarmed it


he wrote of false fatigue alarms and


said


i learned that i could change the


symptoms i was experiencing


with my brain you have


some stake you have some control


over what happens to you it's


complicated it's hard


but you can modify what's happening to


you


some suggest there's nothing subtle


about what he's saying


he's been accused of cognitive


dissonance critics say that crudely put


he's flipped from saying those with


chronic fatigue syndrome


have been ignored to suggesting it's all


in the head


he faces accusations of stomping on the


vulnerable


from a position of power he says he's


been subjected to personalized vitriol


online to understand why feelings run


so high you need to go back to 2005 and


the setting up of a clinical trial


that involved treating people with


chronic fatigue syndrome


with intensifying exercise programs and


the psychological intervention cognitive


behavioral therapy


the trial concluded they can help


patient groups were outraged


a mighty scientific scrap lasting years


ensued


and as it stands the national institute


for health and care excellence or nice


says such exercise programs shouldn't be


recommended


early in the pandemic people with me or


chronic fatigue syndrome


recognise the pattern of symptoms some


people said they were experiencing after


covid


dr charles shepherd has had emmy


following an infection


his viewers patient should manage energy


carefully


and not do incremental exercise this he


says


applies to long covert too and our


experience with people with


me is that this can actually make people


worse rather than better there's another


group who are


much more in the if you like the sort of


mecfs


group who've got long covid persisting


beyond three months who are not


recovering


um who are not getting better with


exercise regimes or whatever


in whom i i think a a management plan


which is


much more consistent with what we do in


mecfs is going to be far more


appropriate for them professor garner


says


his symptoms fit with different criteria


for chronic fatigue syndrome and


me and just because he's found that


exercise helped him to recover


doesn't mean he didn't have it


i really think we need


narratives from people that have


recovered to hear


the case studies like mine and other


people so that we can


do proper research on it it's very


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


covered and treatments such as being put


on a ventilator


can leave some people with organ damage


and other problems


researchers are currently looking at the


different ways the infection affects


people in the long term


why people might be more likely to be


adversely affected


and what treatments might be useful


each patient will obviously present with


their own individual


problems and some of those there will be


evidence of of changes in their


breathing tests


for some in others it may be changes in


their kidney function etc


so for in those cases there are


opportunities to then also then have


treatments that are tailored to those


individuals which may include


drug treatments so i'm not excluding


drug drug treatments altogether


what we don't yet know is is there an


underlying


cause of long covert that itself could


be amenable


to to a drug treatment ban the symptoms


came back


headache everything the risk of long


covid is used by the nhs


as a warning for anyone blase about


catching the virus


when it comes to helping those with long


cover to recover


medics running long cover clinics do


believe that this should include


progressive exercise


and psychological support as part of


their rehab


a survey of over a thousand clinicians


showed 87


supporting the use of intensifying


exercise programs


and 90 percent backing support for mood


disturbances


linked to anxiety and depression helping


people with serious heart and lung


problems to recover


including people who have had infections


is something professor


sally singh has been doing for years


she's 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


exercise didn't make people worse which


is important and secondly


we actually were able to make people's


fatigue better


and there was some some hints that we


were able to improve their


cognitive function as well


one big unanswered question is how


widely and how badly persistent symptoms


after covid


presents in children it plays into one


of the big


unanswered questions should we vaccinate


our young people


dr elizabeth whittaker is researching


these persistent symptoms in children


is it quite hard to to separate out what


might be


physical symptoms and what might be


psychological symptoms them experiencing


the pandemic in different ways i think


every child who experiences symptoms has


that symptom


whether that symptom is exacerbated by


fear and anxiety


and worry because school's been closed


and they've lost their routine and


they've lost


everything that's normal in their lives


is kind of irrelevant because they need


support to recover from that symptom


and our job is to support them through


that whilst understanding more


about how much of it is absolutely virus


in the blood or driving it and how much


of it


is post infectious things and how much


of it may just all be anxiety and fear


related


and we don't know that yet and it's


really key that we understand that


those with me and chronic fatigue


syndrome think


all the research into long covid could


benefit those with me


but say they have plenty to offer in the


other direction


too this needs to be a two-way process


we've got all this experience of how


people should be managing their symptoms


their any post-viral fatigue type


symptoms and from long-term the


experience


and it would be nice i think if the log


covid community


were benefiting from that expertise that


we've built up over many many years


the symptoms are absolutely real


it's how you then deal with them that is


different


people say it's all in the head and that


it's it's it's not true that it's all in


the head


it's the relationship between your


central nervous system


and what you're experiencing in the rest


of your body so it's still


a real experience but it just doesn't


fit the biomedical model the


distinctions may sound subtle


but in the debate over how to treat


those recovering from a virus


they're anything but and they're pivotal


to how we


as a society make sense of lankovid's


shadow

 

[Esther12]

We've previously seen how things like this at the BBC can encourage editors at newspapers to go further, and with NICE coming up this should be another reminder of the sorts of way that the media can avoid addressing real concerns and instead turn disputes around ME/CFS into stories about personal comments on-line or the matter of whether things are 'all in the head', psychological vs physical, whether cognitions can affect health, etc. Anyone looking to defend work like PACE knows that this is a useful tactic for them and will be looking for any excuse to use it.

it is how
01:58
professor garner describes his recovery
02:01
that has sparked huge controversy that
02:03
recovery began by riding his bike
02:06
slowly around liverpool sefton park for
02:09
about 20 minutes
02:10
and then gradually increasing it

So the 'huge controversy' over how Garner described his recovery is apparently noteworthy? This glosses over all the details that we knew would be ignored, but to me still seems like another reason to think that responding to Garner's blog was unlikely to be useful to anyone but Wessely/Vogt/etc. Anything that looks like a clash of anecdotes is only going to help those who are best connected to those with power and influence.

04:22
he faces accusations of stomping on the
04:25
vulnerable
04:26
from a position of power

That is supported by a quote from this tweet:



I didn't read that as an accusation that Garner was stomping on the vulnerable from a position of power but as a comment on the Kelland piece and Garner's tweet about it rather than a comment on Garner. @Adrian ?

On PACE:

to understand why feelings run
04:35
so high you need to go back to 2005 and
04:39
the setting up of a clinical trial
04:41
that involved treating people with
04:42
chronic fatigue syndrome
04:44
with intensifying exercise programs and
04:47
the psychological intervention cognitive
04:49
behavioral therapy
04:50
the trial concluded they can help
04:53
patient groups were outraged

That doesn't help people understand why feelings run so high. It effectively creates a misleading impression though.

i really think we need
06:20
narratives from people that have
06:22
recovered to hear
06:24
the case studies like mine and other
06:26
people so that we can
06:27
do proper research on it it's very
06:30
important that research
06:32
in post-viral syndromes is not shut down
06:36
and it's not shut down by adverse
06:39
advocacy groups that believe that the
06:42
disease
06:42
is permanent

Which "adverse advocacy groups" believe ME/CFS is permanent?

07:52
when it comes to helping those with long
07:54
cover to recover
07:55
medics running long cover clinics do
07:57
believe that this should include
07:59
progressive exercise
08:00
and psychological support as part of
08:03
their rehab
08:05
a survey of over a thousand clinicians
08:08
showed 87
08:09
supporting the use of intensifying
08:11
exercise programs
08:13
and 90 percent backing support for mood
08:15
disturbances
08:16
linked to anxiety and depression helping

It looks like this is based on this journal article, though it doesn't say it's a survey of those running Long Covid clinics: https://bmjopen.bmj.com/content/bmjopen/10/12/e040213.full.pdf

On participants it says "The survey was available to participants from 9 April 2020 to 15 April 2020. Seven days’ access covered a bank holiday, scheduled workdays and a weekend which maxi-mised opportunities to complete the survey. It was distrib-uted to members of the BTS [British Thoracic Society] via the societies’ e-newsletter and healthcare professionals via the BTS Twitter account. A reminder email was sent to BTS members 6 days later; a reminder to participate was retweeted by society members and the BTS encouraging both BTS members and health-care professionals to participate and to share the survey with colleagues. The survey was not restricted to UK-based healthcare professionals, although the country of prac-tice was noted on the survey."

This probably isn't important, and I don't see why the survey in this paper would be seen as particularly important, but the only 87% I could find was: "The impact on employment was also rated highly, including advice on returning to usual employment (87%), where to get financial support advice (75%) and advice on returning to alter-native employment (74%)."

I couldn't see 'intensifying' in there when I was looking for the exact section being referred to.

They say things like:

There was overwhelming support for early post-discharge from the hospital phase of the recovery programme to advise patients about the management of fatigue (95% agreed or strongly agreed), breathlessness (94%) and mood disturbances (including symptoms of anxiety and depression, 92%). In recognition of the current UK community ‘lockdown’, there was clear agreement to provide support for coping with social isolation (91%). At this early stage in the recovery process, there were less strong recommendations about cough management, delivery of an exercise programme or support for post-traumatic stress disorder (PTSD), but these comfortably exceeded the 70% threshold, at 81%, 80% and 78%, respectively.

The essential components which reached consensus for the later phase of recovery (6–8 weeks postdischarge/episode and following the assessment outline earlier) are displayed in figure3. The most frequently recommended items included advice on returning to usual exercise habits (93% either strongly agreeing or agreeing), 91% recommending advice on community exercise schemes, and, given the lockdown at the time of writing, advice on community exercise schemes (once social isolation policy is relaxed) and advice for engaging in outdoors activities (once social isolation policy is relaxed) were highly rated (91% and 93% respectively) by respondents. Similarly, exercise advice for home-based aerobic and resistance programmes was highly rated (90% and 88%, respectively).

Components for COVID-19 rehabilitation: the components highlighted as important to a COVID-19 rehabilitation model.‘(I)feel strongly pts will struggle with post -COVID-19 standard exercise prog. For example look at problems recruiting to post COPD exacerbation PR.(I)feel should be replaced by physical activity prog plus something like yoga / tai chi or similar. If we disproportionately focus on the exercise - like we do in standard PR - only most motivated pts will complete and they will probably be the ones who would have gone away and exercised anyway’.

Take guidance from established rehabilitation models: we should look to use/adapt/learn from current models of rehabilitation and/or holistic care services (eg, pulmonary/cardiac/neurological/palliative/postintensive care rehabilitation, psychological support (eg, IAPT and cognitive–behavioural therapy), occupational therapy, music therapy, yoga/tai chi, SALT, community gyms, pastoral support, acupuncture and hydrotherapy). Education, exercise and social support: the proposed components for the new rehabilitation model include1.Education for self-management: cough, sputum clearance, breathlessness, fatigue, frailty, pain, psychologicalwell-being, behavioural change, impact of comorbidities, energy conservation, falls, improving function for daily activities, nutrition, inhaler technique, signposting, skin integrity, swallowing and voice care.2.Exercises (physical/psychological): cognitive function, exercise programme, inspiratory muscle training and neurorehabilitation.3.Social support: caregiver support, guidance in line with government recommendations and group activities to facilitate peer engagement.

10:25
those with me and chronic fatigue
10:27
syndrome think
10:28
all the research into long covid could
10:30
benefit those with me

Maybe some do. If it's from the UK I expect it's quite likely to make things worse.

 

[Esther12]

One more point - I think it's a mistake for Shepherd, or anyone else, to talk as if patients have any real expertise for helping Long Covid patients manage their conditions. I don't think that there's good evidence that we do. Even for other forms of PVFS we really don't know what's best in the early stages of illness.

Saying that, I'd have hated to be in Shepherd's position with this, and I'm sure they will have avoided using anything he said that usefully challenged their narrative.

 

[rvallee]

Selective truths are the name of the game.

Textbook manufacturing consent.

 

[Invisible Woman]

Which "adverse advocacy groups" believe ME/CFS is permanent?

Exactly.

If I have a criticism of ME charities in the past it has been that I think they're over optimistic & therefore potentially misleading about recovery.

Even up until the last year or so I have read that most patients recover or at least improve in time. That's from both MEA and AfME.

 

[rvallee]

One more point - I think it's a mistake for Shepherd, or anyone else, to talk as if patients have any real expertise for helping Long Covid patients manage their conditions. I don't think that there's good evidence that we do. Even for other forms of PVFS we really don't know what's best in the early stages of illness.

Saying that, I'd have hated to be in Shepherd's position with this, and I'm sure they will have avoided using anything he said that usefully challenged their narrative.

It is definitely a fact that we do understand it better than anyone, at least in general terms. And it's not even close, especially for those who somehow bizarrely insist, INSIST, that this is just fatigue and obviously meaning motivation. Which is apparently the standard for the behavioral crap: it's "better" than nothing, which it actually isn't but it's their argument for keeping their junk.

Of course that's just too weird, patients knowing better than "experts" is a bit too much to accept. Even if true. But it's a true statement nonetheless. It's explicitly the fact that we know next to nothing and yet still understand it better that is the problem, caused by the fact that medicine has essentially understood exactly nothing about it, by choice. And that the fake experts like Wessely and Sharpe have beliefs that push them further away from understanding than people who know nothing at all about it, their ideas are fixed, immutable and tied to their self-interest.

But this continues the weird trend where medicine pretends to acknowledge that patients are the experts on their conditions, at least to some degree. But not us. Because reasons, mainly having to do with the fact that this means that medicine is failing miserably. Which it is, but that's just, I don't know... vexatious, I guess.

 

[DokaGirl]

Overcoming your fear of exercise, and going out there and doing it will cure you. Not true!

During several years of gradual onset following an EBV infection, I vigorously exercised 4 or 5 times per week: aerobics, dance, running, etc. I became increasingly worse with orthostatic intolerance, unusual fatigue, dizziness etc. A month or two before I became much worse, I was still doing vigorous exercise. This so called treatment for ME did not prevent me from becoming ill.

For many years I walk about 30 minutes per day when I can. This has not cured me. Neither has CBT.

 

[Esther12]

It is definitely a fact that we do understand it better than anyone, at least in general terms. And it's not even close, especially for those who somehow bizarrely insist, INSIST, that this is just fatigue and obviously meaning motivation. Which is apparently the standard for the behavioral crap: it's "better" than nothing, which it actually isn't but it's their argument for keeping their junk.

Of course that's just too weird, patients knowing better than "experts" is a bit too much to accept. Even if true. But it's a true statement nonetheless. It's explicitly the fact that we know next to nothing and yet still understand it better that is the problem, caused by the fact that medicine has essentially understood exactly nothing about it, by choice. And that the fake experts like Wessely and Sharpe have beliefs that push them further away from understanding than people who know nothing at all about it, their ideas are fixed, immutable and tied to their self-interest.

But this continues the weird trend where medicine pretends to acknowledge that patients are the experts on their conditions, at least to some degree. But not us. Because reasons, mainly having to do with the fact that this means that medicine is failing miserably. Which it is, but that's just, I don't know... vexatious, I guess.

If you're saying that many patients are aware of problems with the claims coming from people like Wessely and Sharpe, then I'd agree. But I meant that we don't know how Long Covid patients should respond to their own illness. eg: while we're aware of the spin and misrepresentations surrounding GET that's not the same as knowing whether or not a Long Covid patient might improve with a form of GET themselves. Things that a long-term patient finds useful are less likely to be appropriate for a patient who was newly ill and facing a high chance of natural improvement. I think that warning them of the way evidence has been spun is likely to be useful but that doesn't lead to useful knowledge about how any individual patient should be managing their symptoms.

 

[Peter T]

One more point - I think it's a mistake for Shepherd, or anyone else, to talk as if patients have any real expertise for helping Long Covid patients manage their conditions. I don't think that there's good evidence that we do. Even for other forms of PVFS we really don't know what's best in the early stages of illness.

Though I agree, indeed so little yet has any evidence base in relation to ‘long Covid’, we do need to be making a noise about there being no evidence for exercise being a universal panacea for post viral conditions of any sort and that pointing out people experiencing Post Exertional Malaise should be very cautious in relation to exercise.

The BPS devotees are also effectively drawing parallels to ME/CFS and advocating exercise on the basis of PACE and related evidence, so we need to be saying whether ‘long Covid’ overlaps with ME or not this is appalling research. We need to demand adequate science not imposition of personal beliefs.

 

[Lilas]

Exactly DokaGirl. Since the start of the illness (12 years ago), I have never stopped taking walks several times a week. At the beginning it was 45 min., but it made me so sick (PEM), that I had to reduce to 30 min. On those days, I then have to lie down for the rest of the day. This is the reality.

The exercise never cured me, period, even if it displeases
to those who prefer their unproven hypotheses.

 

[Adrian]

I didn't read that as an accusation that Garner was stomping on the vulnerable from a position of power but as a comment on the Kelland piece and Garner's tweet about it rather than a comment on Garner. @Adrian ?

It wasn't it was refering to Garner's comment about "constructive dialogue" and how that isn't possible when people like Sharp are using their media contacts to attack patients. The part about patients calling for high quality research is an important part of the message as well (both damning to Sharps work) and saying patients want and expect good research.

I feel that the journalist who used this deliberately chose to use it in a misleading way. Which to my mind is unacceptable from a journalist. @dave30th do you have any comments on such journalistic practice?

 

[Barry]

During several years of gradual onset following an EBV infection, I vigorously exercised 4 or 5 times per week: aerobics, dance, running, etc. I became increasingly worse with orthostatic intolerance, unusual fatigue, dizziness etc. A month or two before I became much worse, I was still doing vigorous exercise. This so called treatment for ME did not prevent me from becoming ill.

Can I ask: Were you doing this independently of any medical advice or direction? Or was it part of a treatment plan?

Needless to say please ignore if such things are not for public consumption.

 

[FMMM1]

I've never been shy of criticising AfME in the past but they have really raised their game recently.

What really upsets me about news stories like the one on Newsnight is how it affects the way I am treated by people who know me. It pains me to think of friends and family saying "Did you see Newsnight last night?" etc.

Yes, exactly the same with BBC Today Programme when they've had BPS enthusiasts on. I recall the Newsnight journalist in question doing another piece on Covid which featured Sir SW and Dame CG. I can't remember what they were babbling on about but raised my concerned about her connections.

Interesting. I need to re-watch but I think I recall some comment about "attacks" "militant patients". To me the remarkable thing was the way the BPS shysters managed to deflect the argument. We know now that NICE downgraded the contentious studies [PACE] and we know they wouldn't release the PACE data - but those aspects weren't raised - just the militant patients.

I hadn't realised the journalist had links to BMJ.

Might be worth re-watching and complaining to the BBC if the reporting wasn't balanced.

 

[FMMM1]

It wasn't it was refering to Garner's comment about "constructive dialogue" and how that isn't possible when people like Sharp are using their media contacts to attack patients. The part about patients calling for high quality research is an important part of the message as well (both damning to Sharps work) and saying patients want and expect good research.

I feel that the journalist who used this deliberately chose to use it in a misleading way. Which to my mind is unacceptable from a journalist. @dave30th do you have any comments on such journalistic practice?

If you hold those views then it may be worth complaining --- but yes if it's contrary to journalist/BBC code then that's relevant.

I know someone who's a retired journalist might ask - might not get a reply though!