2021 Pan-Europe ME Patient Survey (EMEA)

We closed the survey today for all languages. We received 12.197 responses in total. Some of those will be incomplete, but we are still well beyond out goal of 10.000 responses. Thanks to everyone who shared, and to everyone who answered!
 

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NelliePledge said:
@trudeschei
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No, it is not published yet.
We had very few respondents from English speaking countries.
Norway (with a population of 5 million) had 3000 responses, while there were only 900 form the UK (with an estimated 250000 ME patients) and around 500 from the US. With the help og OMF we are now trying to reach the US and the UK, but the response is lukewarm this time round as well. I am at a loss when it comes to reach these these patients :(

Please share!

https://no.surveymonkey.com/r/courseofillness22

Here is a page on our website about the survey as well:
https://www.me-foreningen.no/course-of-illness-survey-2022/
 
Dolphin said:
New press release:
A Shocking Indictment of European Research and Healthcare Policies for Myalgic Encephalomyelitis

The European ME Alliance today releases the findings of a comprehensive survey shedding light on patients across Europe

https://europeanmealliance.org/emea-pan-european-survey-pr-uk.shtml
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From ME Research UK:

Yesterday (7th April) was World Health Day 2024, under the slogan ‘My health, my right’. To coincide, the European ME Alliance released the first-ever Pan-European survey which underscores the urgent priority for healthcare systems to recognise ME/CFS as a serious physical illness and provide better medical care, financial support, and social services, as well as a fully funded long term strategy of biomedical research into the disease. Read a summary and specific results from the UK repondees - https://tinyurl.com/367j5evm #MECFS #MyalgicE #MyalgicEncephalomyelitis
 
The survey is now published through European ME Alliance:
https://www.europeanmealliance.org/documents/emeaeusurvey/EMEAMEsurveyreport2024.pdf

We asked about when respondents got ill, how long it took to get a diagnosis, how the course of illness had been, and about factors that had affected course of illness.

  • Many respondents had been ill for a very long time, 20 , 30 or 40 years.
  • Many had waited very long for a diagnosis, in norway 6 years, longer in most other countries.
  • A long period from onset to diagnosis was associated bort with ,more severe disease and a more serious course of illness.
  • Those with early onset were overrepresented among the severely ill, regardless of disease duration
  • A deteriorating course of illness, or a fluctuating one, was far mor common than improvement over time
  • Very few felt they received good supprort from their health care system, welfare system, schools or other public institutions
  • Other ME patients were seen to be most supportive
  • Pacing (energy envelope) and being active within the energy envelope were the most beneficial coping strategies
  • CBT (as a "cure") and exercise therapy was harmful, CBT as a coping tool marginally beneficial
The report also contains breakdowns for all countries. W are happy to share country data with organisations that want them for their country.
 
Great initiative to do the survey; great interview, big thanks to all involved.

A couple of comments I had on what was said in the interview.

There's good data there on people with ME/CFS not being opposed to/frightened of activity, which is something we are often accused of. There's a chart shown at 16.42 on factors affecting the course of the illness. 'Physical or mental activity within energy envelope (avoiding PEM)' was rated second most helpful only to pacing.
There is also good data in the survey about harm caused by GET and 'CBT as cure' (also noted that 'CBT as support' tended to cause more harm than good in severe patients)

The discussion about recovery reminded me that I think we still aren't getting across rates of recovery in a nuanced way. By that I mean, we aren't acknowledging the fact that a lot of/most people recover in the first couple of years. By doing that, we make it easy for people who do recover in that time frame to think that they are special and that whatever they did at the time of their recovery was instrumental in their recovery. People promoting the psychogenic hypothesis and rehabilitation do truly see people recover, because people do recover. It's just that there is no evidence that their 'think better' treatments cure.

Trude says that she would like to take back the term 'biopsychosocial'. She points out that things like financial difficulties and lack of family support do make a difference to prognosis. I think this is a really interesting thought. Things like stigma certainly do make a difference to feelings of self-worth, and willingness to seek medical support for ME/CFS and other health issues. Going forward, I am going to avoid calling the proponents of the idea that ME/CFS is psychogenic and/or can be fixed by positive thinking and getting off the sofa 'BPS proponents'. I'll probably just avoid the term 'biopsychosocial'.
 
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Hutan said:
Trude says that she would like to take back the term 'biopsychosocial'. She points out that things like financial difficulties and lack of family support do make a difference to prognosis. I think this is a really interesting thought. Things like stigma certainly do make a difference to feelings of self-worth, and willingness to seek medical support for ME/CFS and other health issues. Going forward, I am going to avoid calling the proponents of the idea that ME/CFS is psychogenic and/or can be fixed by positive thinking and getting off the sofa 'BPS proponents'. I'll probably just avoid the term 'biopsychosocial'.
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The idea that health has multiple dimensions encompassing those three is wise and good. Even necessary. It definitely needs to happen in the future.

But the biopsychosocial model has effectively made it impossible to do this in medicine. The recent renaming of the American psychosomatic society (or association, whatever) to substitute psychosomatic with biopsychosocial is just one of many examples of how the terms have blurred to the point where there is no distinction. Biopsychosocial has forever been sullied. Psychosomatic gives the game away. Functional had that perfect neutrality and it's precisely because of this that it was coopted.

And with recent decades, holistic has essentially become synonymous with quackery and pseudoscience. In trying to deceive, this industry has essentially killed useful labels, by equating them with, well, them.

So we're really running into a vocabulary wall here. The idea is fundamentally good, done well it would improve health care. Sick people do need social and psychological support (though very rarely from therapists or clinicians), but the BPS ideology is largely built to deny it and more, in large part being motivated by insurance and disability programs who want to exclude disabled people without looking like monsters.

But really there are only so many words that can be used, and if things go on for much longer there will simply be none left to label what is good about this notion, essentially killing this idea. Even patient-centered and evidence-based now basically mean nothing at all, they're purely marketing labels.

It would probably require a fully neutral and made-up term that can't be substituted or equated to a perverted version of the same ideas. But even then, with time they'd just corrupt it anyway. Just like they did with pacing, to make it mean the opposite. Or how they commonly use patient focus groups, 'listening' to them, only to simply push forward the themes and ideas they want. They corrupt everything they touch, and see nothing wrong with it. It's quite absurd.
 
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Hutan said:
Going forward, I am going to avoid calling the proponents of the idea that ME/CFS is psychogenic and/or can be fixed by positive thinking and getting off the sofa 'BPS proponents'. I'll probably just avoid the term 'biopsychosocial'.
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I agree. We should avoid that term completely, and use psychosocial/psychogenic/psychosomatic. The proponents have made it abundantly clear that is their real view of it. The bio stuff is just a bit of marketing speak.
rvallee said:
So we're really running into a vocabulary wall here. The idea is fundamentally good, done well it would improve health care. Sick people do need social and psychological support (though very rarely from therapists or clinicians), but the BPS ideology is largely built to deny it and more, in large part being motivated by insurance and disability programs who want to exclude disabled people without looking like monsters.
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Good idea in principle, but completely hijacked by the psychogenic fanatics.
 
Hutan said:
Going forward, I am going to avoid calling the proponents of the idea that ME/CFS is psychogenic and/or can be fixed by positive thinking and getting off the sofa 'BPS proponents'. I'll probably just avoid the term 'biopsychosocial'.
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That's a good idea in principle. Most people outside our circles don't think much about what BPS actually means - to be fair, academics have been arguing about the originally intended meaning for decades and are still disagreeing. But history aside, if pushed, most people out there today assume it means something akin to what holistic used to mean before the quacks got hold of the term, something to do with supporting ill people socially and psychologically, all very positive and laudable and how could anybody be upset by it. Easy to see why people might get confused by our resistance to 'BPS'. I remember not so long ago our previous Director-General of Health proudly stating that NZ followed the BPS model and I'm sure he meant BPS not 'BPS'

So avoiding the term where possible is not a bad strategy. However, when psychosomatic proponents self-style themselves as BPS it would be good to have a term that makes it clear their 'BPS' isn't BPS as most people assume it is. Faux-BPS?
 
Hutan said:
Trude says that she would like to take back the term 'biopsychosocial'. She points out that things like financial difficulties and lack of family support do make a difference to prognosis. I think this is a really interesting thought. Things like stigma certainly do make a difference to feelings of self-worth, and willingness to seek medical support for ME/CFS and other health issues. Going forward, I am going to avoid calling the proponents of the idea that ME/CFS is psychogenic and/or can be fixed by positive thinking and getting off the sofa 'BPS proponents'. I'll probably just avoid the term 'biopsychosocial'.
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As I mentioned in the interview, biopsychosocial is really parallel to what public health refers to as "social determinants of health." I've mostly avoided the term or dissing the term because, you know, it should be a legitimate term. It's just that these people have hijacked it for their own purposes. So I was very glad Trude made the point that 'BPS' is not the same as actual BPS.
 
Ravn said:
So avoiding the term where possible is not a bad strategy. However, when psychosomatic proponents self-style themselves as BPS it would be good to have a term that makes it clear their 'BPS' isn't BPS as most people assume it is. Faux-BPS?
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Psycho-BPS
BPS-Lite
bPs
I can't believe it's not BPS.

More seriously, if they are going to claim the importance of psychological and social determinants, then they are going to have to account for how persistent misdiagnosis and mistreatment and (wilful) misrepresentation of patients and their objections can be a major secondary psychosocial adversity, making the already very serious primary adversity imposed by the disease itself vastly more difficult and horrendous.
 
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An article about the report is on the front page at the Norwegian broadcaster today.

The case is 22 year old Anja who has been suffering from ME for 12 years and talks about the illness on Instagram to 20 000 followers. It gives a short summary of the EMEA survey. Author of EMEA report and deputy at the Norwegian ME Association Trude Schei says it takes too long to get the diagnosis and that GPs need to learn more about ME. Another important thing is to listen to patient and not pushing them into treatments with no documented effects.

Paediatrician and researcher Maria Pedersen disagree and says her patients have good results with CBT and that it's important to keep hope of recovery.


NRK Anja (22) vil hjelpe andre med ME: - Det er ofte de små tingene som betyr mest

google translation: Anja (22) want to help others with ME: - It's often the little things that mean the most
 
Kalliope said:
Paediatrician and researcher Maria Pedersen disagree and says her patients have good results with CBT and that it's important to keep hope of recovery.
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Pseudoscience peddlers always disagree with research exposing their quackery. These people destroy all hope of recovery for us, then go on about promoting hope. What absurd nonsense.

What do they disagree with? Reality? The data? The survey?
 
rvallee said:
Pseudoscience peddlers always disagree with research exposing their quackery. These people destroy all hope of recovery for us, then go on about promoting hope. What absurd nonsense.

What do they disagree with? Reality? The data? The survey?
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Yes. And never ever showing an ounce of support or compassion for their patients or to use the platform in media to call for more help and resources for their patient group. Obviously all is well and nothing more need to be done, despite report after report showing otherwise.
 
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