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

ME Association Statement re: BBC Newsnight report on Long Covid & ME/CFS

"BBC Newsnight on Thursday 8th April entered controversial territory when it discussed the treatment of Long Covid and ME/CFS. The programme focused on the use of incremental and graded exercise programmes, which as we know are something that many people with ME/CFS find impossible to accomplish without harm.

While the broadcast was interesting, Dr Shepherd (Hon. Medical Adviser to the ME Association) had briefed the producers and pre-recoded a comprehensive review of activity and energy management in both ME/CFS and Long Covid. However, only a very small part of his contribution to the discussion was actually broadcast.

The ME Association has concerns about how Newsnight covered this controversy and how it failed to balance the discussion as well as it should have done. We also objected to the inappropriate Long Covid survey results and the way in which they were used to support the claims being made about exercise therapy in both ME/CFS and Long Covid."

https://meassociation.org.uk/2021/0...re-bbc-newsnight-report-on-long-covid-me-cfs/

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FMMM1 said:
Response from BBC:
"Dear -

Thank you for contacting us with your concerns about our report on 'Newsnight' on 9 April 2021. We’ve watched the piece and spoken to the programme team and we believe this was an impartial report on an issue very much in the public interest.

Professor Paul Garner was interviewed about his personal experience of long Covid, but there was no suggestion in the piece that his experience was the norm, nor that his views were accepted in the wider medical community. His interview was used as a starting point to examine post-viral syndromes such as ME, CFS, and long Covid, and the current medical approaches to the treatment of them. The piece featured a range of voices: Dr Charles Shepherd of the ME Association, Dr Elizabeth Whittaker of Imperial College London, and Professor Chris Brightling and Professor Sally Singh of the University of Leicester. It was made clear that NICE does not recommend exercise programmes for post viral syndromes, and it was explicit throughout that this is a disputed area of medicine and there is still ongoing discussion about the best approach amongst doctors and disagreement between scientists.

Our audience on 'Newsnight' is accustomed to complex stories that present conflicting points of view and we don’t believe they would have taken from this piece any idea that Professor Garner’s views were being endorsed.

Thank you again for taking the time to share your feedback.

Kind regards,

BBC Complaints Team
www.bbc.co.uk/complaints
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I had the same response.
 
"Our audience on 'Newsnight' is accustomed to complex stories that present conflicting points of view and we don’t believe they would have taken from this piece any idea that Professor Garner’s views were being endorsed."
gone from patient blaming to laming the complainant for not understanding the complexity .
 
mango said:
There's a new paywalled editorial by Hanne Kjöller in DN today (Sweden's largest morning paper), about Paul Garner and Minna Johansson's BMJ blog articles.

Det går att respektera lidande som inte kan förklaras medicinskt
https://www.dn.se/ledare/hanne-kjol...ra-lidande-som-inte-kan-forklaras-medicinskt/
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A letter in response to Kjöller's editorial was published today. It's written by a physician with long covid (8 months and counting).

”Svårsmält att bli kallad ’kultursjuk’”
https://www.dn.se/insandare/svarsmalt-att-bli-kallad-kultursjuk/

Google Translate, English
Google Translate said:
Someone who is not stressed or worried about an unknown disease that turns life upside down without any assurances that everything will be fine, is that person adequate? Being a doctor and not thinking about what months of fever, countless amounts of migraine medication and high resting heart rate might do to the body is almost impossible.

Then you are told that it is cultural. I'm imagining things. Maybe I just need a new thermometer?

Waking up every day wondering: Do I have a fever? Does it hurt more than usual? Or is this how everyone feels in the morning at my age?
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(ETA link to Google translated version of the article.)
 
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Speaking of Hanne Kjöller, in a talk today -- arranged by the Swedish Ministry of Social Affairs and their scientific advisory board Forte -- Kjöller claims to see militant influences on research by the Swedish Covid Association, and argues that patient organisations shouldn't be involved in illnesses that can be classified as cultural illnesses (ie psychosomatic) or when there is social infection (ie people getting the illness through reading about the illness on social media and/or talking to others about it).



Google translated transcript said:
But, I want to say too, I wrote [in my book] that you have to engage patient associations. But that was before I had read, among other things, the doctor and medical author Jörgen Malmquist's book on chronic fatigue syndrome and how ME groups in London have affected researchers in a militant way.

And I also think that I see this in the Swedish covid association, that you want to direct research to what fits ideologically, not what..., that you want the solutions or the answers you want.

And I do not know to what extent what [Swedish covid researcher] Jonas Ludvigsson has been exposed to, to what extent it is organized from patient organizations, but I think it also shows, I have got like a small balance in that view here, that too much influence from patient organizations when it comes to at least these diseases, which to some extent can be classified as cultural diseases or where there is a social infection. There are a number of problems, such as letting patient associations control research.
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:mad::mad::banghead:
 
mango said:
Speaking of Hanne Kjöller, in a talk today -- arranged by the Swedish Ministry of Social Affairs and their scientific advisory board Forte -- Kjöller claims to see militant influences on research by the Swedish Covid Association, and argues that patient organisations shouldn't be involved in illnesses that can be classified as cultural illnesses (ie psychosomatic) or when there is social infection (ie people getting the illness through reading about the illness on social media and/or talking to others about it).





:mad::mad::banghead:
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Wow :confused: :banghead:
 
mango said:
Speaking of Hanne Kjöller, in a talk today -- arranged by the Swedish Ministry of Social Affairs and their scientific advisory board Forte -- Kjöller claims to see militant influences on research by the Swedish Covid Association, and argues that patient organisations shouldn't be involved in illnesses that can be classified as cultural illnesses (ie psychosomatic) or when there is social infection (ie people getting the illness through reading about the illness on social media and/or talking to others about it).



:mad::mad::banghead:
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Very sad and frustrating to see that the publisher of evidence based reviews SBU (the Swedish Agency for Health Technology Assessment and Assessment of Social Services) is tweeting/endorsing the event :grumpy:


The Swedish Covid Association have responded to some tweets, reiterating that they are simply asking for good quality research, "We have worked for public education about long-term covid, encouraged the interest of researchers and worked for research funding. All in a democratic patient association.", maintaining that Hanne Köller actively opposes patients' ability to organize and participate in the democratic debate and that her claims are not substantiated at all. And that they believe that all researchers should be able to participate in the debate, regardless of their views, "But government organizations that claim to promote research and knowledge development should not create arenas for unsubstantiated witch hunts on the sick."

Déjà vu... :(
 
mango said:
Speaking of Hanne Kjöller, in a talk today -- arranged by the Swedish Ministry of Social Affairs and their scientific advisory board Forte -- Kjöller claims to see militant influences on research by the Swedish Covid Association, and argues that patient organisations shouldn't be involved in illnesses that can be classified as cultural illnesses (ie psychosomatic) or when there is social infection (ie people getting the illness through reading about the illness on social media and/or talking to others about it).





:mad::mad::banghead:
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Seriously, health is way too important to be left to medical professionals. This can't work, all that power with no accountability. What cruel, barbaric nonsense.

Also: this is solid evidence for future class-action lawsuits. It's mindless drivel, there is zero evidence behind this ideology. Medicine may not have to justify anything they do, it's not accountable to anything, but governments do, and there is no defending this horseshit. No one can claim they seriously thought this is credible, extreme gullibility is not a defense and this clearly informs government policy.
 
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mango said:
Speaking of Hanne Kjöller, in a talk today -- arranged by the Swedish Ministry of Social Affairs and their scientific advisory board Forte -- Kjöller claims to see militant influences on research by the Swedish Covid Association, and argues that patient organisations shouldn't be involved in illnesses that can be classified as cultural illnesses (ie psychosomatic) or when there is social infection (ie people getting the illness through reading about the illness on social media and/or talking to others about it).
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Somebody's empire is under threat.
 
It's pretty astounding just how weak or non-existent the evidence base for these ideas about cultural illnesses and social infection are - but how they seem to be accepted and spread by people that should know far better. And there's such a lack of appreciation for the effects this has on people who've had their lives ruined and just want help.

Maybe the fact that Sweden has taken a lax approach to covid means there's a lot of people that want to downplay that long covid is an actual consequence of that. I just don't understand the thought process of people that are trying to spread these ideas.
 
mango said:
Speaking of Hanne Kjöller, in a talk today -- arranged by the Swedish Ministry of Social Affairs and their scientific advisory board Forte -- Kjöller claims to see militant influences on research by the Swedish Covid Association, and argues that patient organisations shouldn't be involved in illnesses that can be classified as cultural illnesses (ie psychosomatic) or when there is social infection (ie people getting the illness through reading about the illness on social media and/or talking to others about it).



:mad::mad::banghead:
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ETA:
Sten Helmfrid tweet Google Translate said:
@socialdep [the Swedish Ministry of Social Affairs], why are you inviting @hanne_kjoller to conversations on scientific matters where she lacks competence? She says that #MECFS patient associations have controlled the research. The criticisms made by the associations have also been voiced by researchers in the scientific literature

Could you ask @hanne_kjoller to give a written answer to my debate article in Läkartidningen [the journal of the Swedish Medical Association], which summarizes the criticism of the largest ME/CFS treatment study to date. Why is the [Swedish ME Association] RME not given a chance to respond to her claims? #SvMECFS
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Today I received the following reply from the BBC in response to my escalation of my complaint about Gerada’s comments on BBC Breakfast:
Thank you for taking the time to contact us again about BBC Breakfast. Firstly, we sincerely apologise for the time taken to respond here - it's taken much longer than usual and we're very sorry.

We appreciate your further feedback and have shared this again with the programme team. It’s important to note that both guests had been physically healthy and able prior to their Covid experience.

Dr Gerada mentioned she had previously done 10k runs and marathons, but we realise you feel the fact they had no pre-existing medical conditions should have been much clearer for viewers to take into account, given their later advice on the general benefits of graded exercise. Prof Garner also revealed he had consulted his doctor about his post-viral situation. Both of them stressed the importance of not overdoing things and the risk that trying too much too soon would be harmful. Prof Garner shared an anecdote of a friend who had “recovered from ME/CFS” and greatly helped him with the psychology of recovering from such a profound illness.

The fact that both guests were very fit and enjoyed exercise (prior to Covid) was mentioned at the end, so we feel most viewers with long term health conditions would have taken that into account. We think that viewers with similar health experiences to them both could have taken their advice without risk, and that the discussion was duly accurate to their own conditions.

“The ‘good advice’ that we reflected on at the very end of their contribution was specific to the power of the mental approach to getting through long covid. Dr Gerada has just reminded viewers to “get those thoughts and try to change those thoughts around into what you can do rather than what you can't.” Charlie went on to say “Interesting how you have two experts in a medical scientific way both of them saying the approach mentally is so important as well” with Naga concluding “And give yourself time to recover”. So we feel this reminded viewers to approach their recovery with caution as well as positivity.

We’ve noted your further comments but would not agree that the advice would pose harm to the general population, or was not duly accurate in its wider message. It’s not always possible to highlight exceptions to the rule, but we note you would prefer to see that happening.

At this point, we cannot correspond with you further at this first stage of the complaints process. If however you are still dissatisfied, you can contact the BBC’s Executive Complaints Unit (ECU). The ECU is stage 2 of the BBC’s complaints process.

Details of the BBC complaints process are available at http://www.bbc.co.uk/complaints/handle-complaint/ where you can read the BBC’s full complaints framework. You should contact the ECU within 20 working days of receiving this reply. You will need to explain why you believe there may have been a potential breach of standards or other significant issue for it to investigate.

If you wish to contact the ECU, we have provided a unique url link for you in this email. This will open up further information about how to submit your complaint. The link will then not work after you have submitted your complaint. You will be asked for the case reference number we have provided in this reply.

This is your link to contact the ECU if you wish: Click here

Kind regards

BBC Complaints

www.bbc.co.uk/complaints
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I was particularly disappointed that the BBC seem to think that Gerada and Garner are different to people with other chronic illnesses because they were both healthy before they became unwell.

I’m probably wasting my time but I will escalate it to the ECU. I have also referred it to Ofcom (which the BBC informed me I could because they were taking so long to respond.)


[Edit: I’ve not managed to keep up with this thread so apologies if this BBC response has already been posted.]
 
Wow. They've totally misunderstood, haven't they.

There was nothing in your original complaint that suggested that you "feel the fact they had no pre-existing medical conditions should have been much clearer for viewers to take into account, given their later advice on the general benefits of graded exercise".

It's as if they have wrongly concluded that people with ME (or other exercise intolerance) had some kind of pre-existing medical condition before they got ME and weren't completely healthy. But maybe that's a myth that needs to be tackled?
 
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