Discussion in 'General ME/CFS News' started by Jonathan Edwards, Oct 17, 2017.
Doesn't sound good.
Thanks, @Jonathan Edwards. It was not only the BPS bits that irritated me, but also the seemingly low quality of their papers and scientific appoach. I also don't trust another member's expertise who isn't BPSophil at all https://me-pedia.org/wiki/Olli_Polo.
I mean, is EUROMENE really only a forum? What about the working groups on common goals? Surely, the less qualified members could benefit personally from being in a network that supposedly funds some of their working group related activities, but are they really ready to learn from other, more qualified members? Conversely, is it good for EUROMENE to have people on board who might qualify as "quacks"?
Anyhow, your answer sounded comforting and encouraged me to browse the MEpedia site on EUROMENE. Actually , I found quite a number of promising as well as highly qualified members (anomg others, a certain Professor Edwards from UCL). On the other hand, I found also more members whose affiliation with EUROMENE worries me.
E.g., the ME/CFS Center at the University Hospital Oslo, currently heavily criticized for their BPS approach [if I understood properly, @Kalliope ? - see the Petition posted here: https://www.s4me.info/threads/news-from-scandinavia.647/page-15#post-98169 ], appears to be proud to be affiliated with the EUROMENE network:
"Norges deltagerei styringsgruppen er professor Anne Marit Mengshoel, Universitetet i Oslo, og Elin B Strand, Nasjonal Kompetansetjeneste for CFS/ME. Ingrid B Helland fra Kompetansetjenesten er vararepresentant. "
Elin B Strand is a psychologist. She has collaborated with Leonard Jason (DePaul University), they co-authored some papers. How is this possible, to work with Leonard Jason and at the same time work at a BPS oriented ME center?
Anne Marit Mengshoel writes stuff like this:
Narrative Review: Rethinking physiotherapy for patients with fibromyalgia - lessons learnt from qualitative studies, https://www.tandfonline.com/doi/abs/10.1080/10833196.2017.1377975
She happens to be in the EUROMENE "Working Group on dissemination and exploitation, patient involvement, digitalisation".
So, should we be involved? How? What do forum members think?
I don't really know Euromene so won't attempt to answer the questions you have about that forum, but when it comes to the National center of excellence for CFS/ME in Oslo, Norway I sadly must confirm their biopsychosocio approach to ME. They are also enthusiastic to Lightning Process and critical to the national patient organisation.
Yes, they have participated in conferences and have also collaborated with Leonard Jason. Regarding that collaboration; this thread might be of interest. Seems the Norwegian CFS/ME-center and Leonard Jason have different opinions about the study's conclusions
I am not familiar with prof. Anne Marit Mengshoel, just Elin B Strand and senior doctor Ingrid Helland (latter once yelled at me for criticising PACE)
Yes, EUROMENE is just a forum.
What is confusing is that certain EUROMENE members are part of a research grant called a 'COST Action'. This is a European Union grant for promoting meetings and gathering information relevant to collaboration and education. So there are no 'specific country members' for EUROMENE but there are for the COST Action. The COST Action is really just an awareness raising exercise so is going to do nobody any harm. This is what has the 'working groups', which are just groups of people prepared to spend time gathering data to justify the money for having meetings.
The people who set up the COST Action are very biomedically orientated. Moreover, they are the higher quality scientists, unlike some others who might like to run things. However, part of the aim is to bring in people from each country and the organisers have wanted to be inclusive to allow BPS types to benefit from the biomedical environment if countries cannot provide anyone else. How that works out is anyone's guess, but, as I say, since this is not actually a grant for active research no great harm can be done.
EUROMENE is specifically a forum for researchers. So people on this forum in general have no real reason to be involved. However, EUROMENE is keen to have patient dialogue and the COST Action encourages patient involvement. If patients want to attend the EUROMENE meetings currently funded by the COST programme then why not - they could contact their country representative. The people running the programme would have no problem with patients expressing their views about BPS and so on.
Maybe I should actually go back to where EUROMENE started - that will give you an idea. EUROMENE was set up by people like Derek Pheby (I think it may have been his idea). Pheby is the epidemiologist who got Nacul and Lacerda involved in the study published in 2011. He is one of the wisest of scientists in the ME field and not a prima donna. He is now retired but still gathering important data on economic costs of ME. If for no other reason, I think people should embrace EUROMENE because it continues his aims.
Sounds like a good initiative. I hope those with a biopsychosocial approach might adjust a bit when meeting peers with different views. As long as they're not influencing others, using it as a platform for further research into their model or recruit new people with same opinions to the forum, I don't have strong feelings against them participating. In fact, I've stressed that BPS researchers should attend more international conferences and meeting places about ME.
I think many BPS researchers who are not hard core believers probably have issues due to the silo effect, they research and pay attention to their area but are not aware of the work in other disciplines. Indeed, all doctors, scientists and patients can have issues like this. Communication is how these things are resolved over time.
Anyone basing their views on what amounts to ideology are much less likely to benefit.
Who knows, it may even be beneficial, showing to other more objective scientists what we are up against.
Derek Pheby wanted research to be done asking people who felt they had ME what symptoms they had. Simple, straightforward, commonsense but the BPSers blocked it. Where we might have been today if someone had had the courage to fund it.
Thank you both, @Kalliope and @Jonathan Edwards!
Such a relief to read this! -- my confidence in Lenny Jason is restored.
Very good to know. It's a pity that Derek Pheby is not doing epidemiological studies himself anymore. I just had a quick glance and found his research very promising: https://me-pedia.org/wiki/Derek_Pheby. Apparently, the 2018 study that compared the functional status and wellbeing in sufferers with MS and ME is hugely influenced by his work.
I wonder, since it's Europe based, whether Fluge and Mella weren't interested in joining EUROMENE?
Would be great if we could find somebody who had the capacity of doing this! Unfortunately, I don't.
(And thank you @Trish for merging the threads )
I also think it should be embraced but perhaps they need to have membership requirements that exclude psychosomatic nonsense.
New leaflet from EUROMENE about their work. Includes short info on 'What is ME?', diagnosis and prognosis.
I would take issue with their statement When fatigue becomes disease.
I'm not sure that that is the way it is. For me, and probably for many others with an acute viral onset, disease became fatigue....assuming acceptance of the word fatigue as adequate. I don't wish to be too obstreperous on the subject but there is an ambiguity in the phrase which does not look quite right.
That is not the best choice of words but the rest of the leaflet is good.
I don't wish to appear political here, but will UK be able to stay in EUROMENE post Brexit? Assuming Brexit does eventually happen of course.
The idea of EUROMENE came from the UK. I don't see any particular reason why it should be constrained by the EU. It is a group scientists, set up by themselves. I am also fairly sure that when it comes to asking for EU grants that the UK will still be able to take part. In the past EU collaborations have included 'neighbour' members like Israel. I see no reason why the UK should not take part in that way.
Even with gradual onset mild ME it isn’t a question of being fatigued and gradually getting worse. The viral flu type symptoms sore throats swollen glands were there too just not so severe to be incapacitated for more than a couple of weeks at a time.
There is an agreement
for certain non eu european countries to take part in EU research projects so it will depend in the UK joining any such agreement (and paying into it).
I think maybe the statement 'When fatigue becomes disease' is intended to be purely a matter of abstract categorisation. That is to say 'When the clinical presentation of 'fatigue' needs to be considered as a disease in itself.' Like: 'When a knocking noise under the bonnet becomes a matter of concern.'
Separate names with a comma.