ME conference in Sweden 11-12th Oct 2023, The Hidden Disease

Kalliope

Kalliope

Senior Member (Voting Rights)
The Swedish patient organisation RME has organised a big ME conference every autumn for several years in a row. This year they are organising a new conference together with the patient organisations in Norway, Finland and Denmark.

The conference will take place in Stockholm and in Göteborg. It will also be streamed online.

The theme is reactivation of virus, connection to Covid-19 and ethical aspects of ME from a patient view.

Presentations:
  • Understanding infectious origin of ME/CFS
    PhD, Dr Bhupesh K. Prusty

  • SARS-CoV-2 induces differential reactivation of latent viruses in ME/CFS
    PhD, Dr Eirini Apostolou

  • Persistent infection and viral reactivation: a driver of common ME/CFS and Long Covid symptoms
    Dr Amy Proal

  • An ethics-based approach to management of ME/CFS and Long Covid
    Professor Diane O’Leary

  • Children with ME taken into custody
    Dr Nigel Speight

  • Patient experiences with public services and interventions in Norway
    PhD Anne Kielland

More information and for signing up:
https://rme.nu/forskning/konferenser/
 
I hope as well as streaming the videos will be available afterwards. An intersting range of speakers, some better than others. I hope Diane O'Leary has taken on board our concerns a few years ago about some of her ideas about ME/CFS.
 
I watched the Amy Proal presentation on viral persistence - just over 30 mins. It was well presented and easy to follow. Nothing new for people here I think, but there are some nice links to papers e.g. a list of all the Covid-19 papers finding viral persistence. One key idea is pathogens persisting in tissue, being sensed by the vagus nerve which stimulates a part of the brain stem to cause the sickness response. Amy talked about the importance of work with tissues.

She emphasised that Long covid is different to ME/CFS, because ME/CFS isn't caused by SARS-CoV-2. I think that's semantics - if people with Long covid meet ME/CFS criteria then I think they have ME/CFS. And, it's highly likely that ME/CFS is caused by a range of pathogens.
 
Hutan said:
She emphasised that Long covid is different to ME/CFS, because ME/CFS isn't caused by SARS-CoV-2. I think that's semantics - if people with Long covid meet ME/CFS criteria then I think they have ME/CFS. And, it's highly likely that ME/CFS is caused by a range of pathogens.
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Also implies that if someone can't prove that they have had a Covid infection that they then can't have Long Covid.
 
I watched the Diane O'Leary presentation on the ethics around medical care for people with ME and LC.
There was no mention of CFS, and not a whiff of retaining a CFS label for psychosomatic people. Perhaps some of the things said on this forum did make a difference.

It seemed reasonable stuff on the whole, and I think worth a listen.

Diane made the point that there aren't really any practice standards in ME and LC. She mentioned NICE and the CDC guidance, but said that it isn't enforced and isn't making its way into clinical practice. She characterised the current clinical approach as 'mayhem', a 'free-for-all' where doctors just get to decide what they do with ME and LC patients based on their own whims, hunches and biases.

She said that no doctor has the resources or mission to resolve the debate on the cause of ME and LC, so they need to follow ethical practice, as happens in other conditions where appropriate treatment is not clear. That is, explain the various views on treatment, say which treatments the doctor is personally willing and able to provide and then leave the patient to decide.

She notes that providers of psychosomatic treatment say that they can't provide the treatment without pretending that it is the answer, that part of the treatment is creating the expectation that the treatment will work. There's a nice quote from Wessely about that.

To that, Diane effectively says, 'too bad'. Ethics require that the doctor is informed enough to understand that there is a possibility (and current science suggests a high possibility) of ME and LC having a biological basis. She says that ME and LC patients are capable of free choice, so their autonomy must be respected, they must be respected. And the doctor must inform the patient of the possibility that there is a biological cause, and that possibility must be represented in the patient's file. Above all, there must not be a closing of the door to possible medical treatment later as so often happens when someone is given a psychosomatic label.

She noted that she doesn't blame doctors, she thinks there is a problem in the link between science and the doctors on this issue. I think that might be letting doctors off the hook a bit - I think there is a problem in the culture of medicine, a lack of respect for certain types of patients, maybe even most patients with diseases that don't have cut and dried signs and tests. That culture extends to the structures that might bridge the gap between the science and the doctors, including medical schools and Cochrane.
 
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Hutan said:
She noted that she doesn't blame doctors, she thinks there is a problem in the link between science and the doctors on this issue. I think that might be letting doctors off the hook a bit - I think there is a problem in the culture of medicine, a lack of respect for certain types of patients, maybe even most patients with diseases that don't have cut and dried signs and tests. That culture extends to the structures that might bridge the gap between the science and the doctors, including medical schools and Cochrane.
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More than a bit imo. Patients should in any case be treated with respect, but also if you find a patient difficult to deal with because there isn't an easy way to diagnose them, don't make it the patients problem. Make it the problem of scientists, medical universities, governments etc. whose job it is to make sure patients can get diagnosed properly and physicians have the tools to do so.
 
Hutan said:
she thinks there is a problem in the link between science and the doctors on this issue
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Although I agree that there's a major problem in the culture of medicine, what she says may be a fair point in some respects.

Most primary care doctors won't see all that many ME patients, they rely on clinical guidelines and the general trend of research to inform their practice, and we're all familiar with the messages about ME that were hammered out to them for 30+ years. If it hadn't happened, there might be a wider range of attitudes, opinions, and practices among them.

As it is, it's going to take even more years to turn that oil tanker round, especially with the BPS lobby busy radioing contradictory instructions to the tugs.
 
Just watched Nigel Speight’s talk. He gives case examples and his first example is now featured in an online petition. He implored listeners to circulate and sign. He gave no name but clear who he means.

This young lady has been through too much. Please sign if not already even if just to show solidarity.

So grateful for what he does.
 
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