[ME/CFS Research Foundation] International ME/CFS Conference 2026 7–8 May

[Utsikt]

I doubt that that such a responsibility has ever been formally established.
Governments have a commitment to health and science to the extent that their manifestos, for which people can vote, have that commitment. A democratic society can decide to vote in a government with no such responsibilities.

The Norwegian government has a formalised commitment (in their 10 year plan - election cycles are 4 years) to prioritising medical research in the pursuit of better health for all.

Meld. St. 5 (2022–2023)

Regjeringens langtidsplan for forskning og høyere utdanning har et tiårig perspektiv, med konkretisering av mål og prioriteringer for den kommende fireårsperioden. Formålet med planen er å koordinere politikken på tvers av sektorer og bidra til langsik...

www.regjeringen.no

And the UNSDGs cover healthcare in goal 3.

Goal 3 | Department of Economic and Social Affairs

Ensure healthy lives and promote well-being for all at all ages

sdgs.un.org

I would like to see more government funding for medical research but, as Socrates (or maybe Plato) predicted, the problem with democracy is that it is dominated by a dislike of paying taxes and the election of people who promise to reduce taces.

That’s a different, but very relevant issue.

 

[Jonathan Edwards]

OK that is Norway and that is a formalised election commitment. A government may have a commitment to nationalise water companies but they do not have a responsibility to so do. It is different from a formalised responsibility. And it is only a commitment to put some resources into medical research. A responsibility to find cures for everything is a less realistic thing.

 

[Utsikt]

OK that is Norway and that is a formalised election commitment.

In the sense that everything a politician does is tied to elections, sure.

You could argue the same for the UNSDGs, even though most nations have endorsed them and therefore accepted a responsibility.

A government may have a commitment to nationalise water companies but they do not have a responsibility to so do. It is different from a formalised responsibility.

How would you define a «formalised responsibility»?

And it is only a commitment to put some resources into medical research. A responsibility to find cures for everything is a less realistic thing.

Fair point, the commitment is to make reasonable attempts at improving the health for all, both short term (care) and long term (research).

 

[Jonathan Edwards]

How would you define a «formalised responsibility»?

Well that is the problem. What formalised rules are there for what a government should do?
Governments started off as mafia gangs who provided protection in return for fees. That continued with King's and stuff, gradually being moderated by poopular uprisings and parliaments. Marx tried to formalise responsibilities for a benevlonet socialist state but it didn;t exactly catch on.

I suspect that the only universally recognised responsibility of government is still military protection.

More importantly, for things like medical research, it is still very much up in the air to what extent citizens of a state want to pay obligatory taxes to support such things. If a certain president decided to close a national medical research facility and people kept voting him in that would be their prerogative, i think.

I am as socialist as they come and I see government funding of research as a no brainer, but judging by the current state of the world that is not the position of the majority. In the UK nobody seems terribly bothered by the fact that 300 people a week are dying in the emergency room unnecessarily because of delays due to inadequate hospital facilities. I think that in that case there is a breech of responsibility in that the public have paid national insurance premiums on the understanding that they will get safe effective medical care in return, which they aren't. For finding new cures, I think there is a more significant gap between any commitment and an actual responsibility.

 

[DHagen]

My assumption, which appears to have been faulty, was that, in discussion the responsibilities of government as a rather non-specific concept, that claims were being made about the proper (which is to say idealized) role of such an institution. For me, this would necessarily include reasonable efforts to ensure the health and well-being of all those under its aegis, which would entail pursuing research toward eliminating debilitating disease - for me, this would qualify as "responsibility" for finding a cure, not necessarily sole or primary responsibility, nor to the exclusion of all other responsibilities, but a responsibility nonetheless.

If the discussion turns upon the responsibilities which specific governments, whatever form those might take, have explicitly claimed for themselves or which the populations they claim to represent have allotted them, this is obviously a different matter. Where my own situation is concerned, given the nature and inclinations of my fellow-citizens and the government they have chosen for themselves, I am uncertain whether they recognize any true responsibilities at all beyond the protection, material enrichment, and continual fellatio of the kakistocracy itself.

Returning to the original point, I willingly acknowledge that, however their responsibilities may be understood, anyone looking to them with the expectation of receiving aid is all but certain to be disappointed.

 

[Utsikt]

Well that is the problem. What formalised rules are there for what a government should do?

The laws they don’t have the numbers to change. For a minority government it might be all laws, for a majority government it might be none, although the constitution in Norway requires 2/3 majority in two consecutive election cycles, and the King can technically veto it.

Then there are the international laws, human rights treaties, and EU/EEA laws.

So while I’m one of those that think the government have a moral responsibility to try to find treatments (which is what I belive DHagen is also referring to), and probably have made quite a lot of formal and informal commitments to do that, there might be few mechanisms that can force it outside of lobbying politicians. And even then, they rarely get involved in the details and would probably hand it off to Flottorp, Aavitsland, Helland and Wyller.

Regardless of that, I’m not sure the right approach is to go looking for it yourself (even though most start that way), but rather to get involved in advocacy and contribute to analyses and scrutiny of research if possible. And just managing as best as you can.

 

[Jonathan Edwards]

Regardless of that, I’m not sure the right approach is to go looking for it yourself (even though most start that way), but rather to get involved in advocacy and contribute to analyses and scrutiny of research if possible. And just managing as best as you can.

Oh, definitely. Moreover, people going asking for off label treatment allows doctors to get away without proper trials. It is counterproductive in terms of the public good. It also provides fodder for the medical sceptics who think ME/CFS is just a made up disease based on pseudoscience.

 

[ryanc97]

MECFS patients have been experimenting on themselves for decades, and it has led to nothing

Well I believe things have changed becuase of the Dara trial.

 

[ryanc97]

My take is that once a cure is out, and the trials show it, maybe in the long term 3-4 years after this Dara trial, FM finally solve the puzzle.

Then, governments will be willing to help. Right now they have no idea what to do

 

[ryanc97]

I doubt that you have complete clarity on what else Dhagen does when they are not posting on this forum, I certainly have no idea what they may or may not do.

I have complained on this forum many a time. That is in part what is here for, peer support from those who are generous enough to give it, no matter whether posting here is the limit of what they can do or they fill their hours in advocacy efforts.

And as for the claim that only other sick people read the forum, that is clearly ludicrous, lol.

I would say 98% are sick people

 

[Andy]

I would say 98% are sick people

And if that is true, 98% is still obviously not 100%.

 

[Arfmeister]

I would say 98% are sick people

Yes, IF these 2% are mostly researchers - or other people invested in ME - that would be quite a substantial amount.

As I understand from @Jonathan Edwards comments: there are not really good platforms where researchers can exchange their ideas critically these days.
A lot of siloing and talking within their own research groups*

*I don’t know if I’m representing your comments in the right way @Jonathan Edwards ?

 

[Jonathan Edwards]

*I don’t know if I’m representing your comments in the right way @Jonathan Edwards ?

Sure.

But I think ME/CFS is becoming an interesting exception where exchange of ideas runs across from reserach workshops to PRIME to here and back again.

 

[salin]

First videos from the 2026 Conference are on YouTube! It's Carmen Scheibenbogen presenting a summary of the treatment presentations to the German public audience. She is speaking in German, but there are English and German subtitles you can select on the settings. The English version has English slides.

The website of the conference now has a webpage where they say "Videos, presentations and short summaries of the lectures are now going online and will be added gradually over the coming weeks." I'll post them here when I see them. I may make summaries each time, but I may not, especially as some things are too technical for me. Feel free to fill in the summary I made or post your own!

5 more videos online:

- "ACCESS" by Meike Dirks'
- "Clinical guidelines and off-label treatment" by ME/CFS by Marie Witt
- "Immunoadsorption for ME/CFS and post-COVID ME/CFS" by Elisa Stein
- "B-cell/plasma cell depletion in ME/CFS" by Judith Bellmann-Strobl
- "The effectiveness of hyperbaric oxygen therapy for ME/CFS" by Claudia Kedor

As mentioned above, all are in german but you can switch subtitles in english on.

 

[salin]

Did they say it about the IA (as it is not included in the inclusion criteria)?

Correction:

In the video, Bellmann-Strobl states that immune absorption is a prerequisite for the CD19 depletion study with Inebilizumab (PIONEER).

For the CD38 depletion study with Isatuximab, the prerequisites are the Bell Score, CCC, autoantibodies, normal IgG levels and normal NK cell counts, NOT immune absorption (AIM-ME).

The planned duration for Isatuximab is 10 months.

Recruitment for both studies is expected to begin in autumn 2026.

ME/CFS Research Foundation

events.mecfs-research.org