Europe: News from the European Union and the European Parliament

European Parliament: COVID-19 pandemic: lessons learned and recommendations for the future

pdf

https://www.europarl.europa.eu/doceo/document/TA-9-2023-0282_EN.pdf

 

I copy the relevant sections here, let me know if I omitted some other interesting part:

The European Parliament

(...)

– having regard to its resolution of 18 June 2020 on additional funding for biomedical research on Myalgic Encephalomyelitis (ME/CFS)2 ,
(...)
– having regard to the DG IPOL workshop of 9 March 2023 on ‘Long COVID’,

(c) COVID, communicable and non-communicable diseases; addressing PASC as part of an EU PAIS strategy

Research:

 

Maybe this thread would have a better place in a different subsection of the forum? Because there seems to be lots about long covid and ME/CFS in this resolution, not just the epidemic itself.

Edit: btw, I've been also wondering a lot recently if it is worth creating a regional thread for EU-level things with regards to ME/CFS and long covid. It is a bit scattered all over the place right now.

The thread has been moved

 

Btw, I've just checked the Hungarian version of the text and while the English text uses the term ME/CFS, the Hungarian one consistently says myalgic encephalomyelitis. Not sure what is going on there as Hungary is definitely a CFS country as far as naming goes. I find it hard to get even sufferers to call it ME/CFS. ME as a term here is pretty much unimaginable. I'm not complaining, of course, I'm just very surprised.

 

And they call PEM the way I translate it on my website in their translation. Great! They usually translate PEM pretty horribly (on the rare occasion anyone even translates it), because the translator has no idea what it actually means. I don't know if my website was a source for translating the term or it was just a coincidence but I'm glad it is the same.

 

Instead, some translator has committed the sin of rendering (I presume) the French "rappelle" as "recalls" Sorry, but that always bugs me when it happens - it is a pig to find a correct English term, but "recall" ain't it.

 

https://twitter.com/user/status/1699701425343787241

 

"#longcovidtrials design workshop organized by #EMA - Nov 17

unofficial summary-
https://www.facebook.com/1000047848...ADhnHzJA2DUyVsUnKxzV2hfWHcMpbS8LoidGpQyl/?d=n

 

Seems strange to reply to your own post ---
Noticed this in the summary [see link to Facebook post with summary of EMA meeting] -
"Director General Sandra Gallina from the European Commission, on the other hand, seemed to be the only one at the meeting that thought "more insights into pathology were needed first" before clinical trials could move on. But the European Commission in most cases approves the decisions from EMA, so that should hopefully not become a problem."
Interested in your take on that i.e. balance between:

• action now (testing drugs immediately); and
• more research to deliver this "insights into pathology -- needed first" + what research genetics/genomics like DecodeME?

 

Just came across this article:

Chronic fatigue syndrome, EU still knows too little and calls for research

Two million people in the EU and UK alone would suffer, with negative spillover effects of €40 billion annually. Varhely: "Horizon calls revised to invest here. Targeted research can be done.

(...)

Health Commissioner Oliver Varhely is calling on the medical-scientific world, academics, and researchers to take advantage of European resources to invest right here: “Horizon Europe (the EU research program, ed.) will continue to offer funding opportunities for research, as the topics of the calls are broad enough to allow for more focused research on ME/CFS.”

Moreover, Varhely explains, in responding to a parliamentary question, that “the Commission recognises the need for solutions to address chronic fatigue syndrome efficiently.” It is precisely for this reason that themes and topics of research calls for the allocation of European funds “have recently been opened” again under Horizon Europe, which in this way “offered researchers in the Me/Cfs area the opportunity to apply for research funding.”​

Full article: https://www.eunews.it/en/2025/01/28...till-knows-too-little-and-calls-for-research/


The parliamentary question mentioned in the article:

Pascal Arimont (PPE)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes extreme exhaustion, cognitive dysfunction, chronic pain and a range of other symptoms. Many ME/CFS patients remain ill for decades and an estimated 25 % of ME/CFS patients are house- or bed-bound. The condition is estimated to affect 2 million individuals across Europe. There is currently no diagnostic test, no approved treatment and no cure for ME/CFS. Although the pathology of ME/CFS remains poorly understood, the illness is often triggered by an infection. Many patients with severe long COVID suffer from a similar syndrome and experts estimate that the COVID-19 pandemic dramatically increased the prevalence of ME/CFS.

The European Parliament adopted a resolution on 18 June 2020[1] in which it listed several EU-level actions required to help tackle the impacts of ME/CFS.
What will the new Commission do to finally:

1. Advocate for better recognition of ME/CFS as a legitimate health condition?
2. Ensure significant funding for biomedical research into ME/CFS at EU level, prioritising calls in this specific area?
3. Promote EU-level measures and funding for awareness campaigns about ME/CFS, medical education and training for health and social care professionals, and the exchange of ME/CFS-related best practice across Member States?

Submitted: 11.11.2024

---

(Side note: the correct spelling of the Health Commissioner's name is Várhelyi with an -i. I know about him, he is another member of Orbán's party. Quite controversial but for unrelated reasons.)

 

European Agency for Safety and Health at Work (EU-OSHA): Long COVID: Rehabilitation and practical workplace support

"New publications from EU-OSHA detail how to support workers affected by Long COVID, offering information on rehabilitation and guidance on how to assess work ability and make workplace adaptations.

Long COVID impacts workers’ physical, cognitive and mental health, and quality of life. All parties in the workplace should be involved in putting in place a phased return-to-work plan that considers workload adjustments, flexible scheduling, necessary workplace accommodations and ensures access to rehabilitation.

Read the discussion paper and explore EU-OSHA´s new guides for workplaces and occupational physicians.

Check out the OSHwiki article and this publication on the impact of long COVID on workers and workplaces and the role of OSH."

---

I haven't read through all of this. I did a quick search in the Discussion paper: Long COVID: worker rehabilitation, assessment of work ability and return to work support and found this so far:

 

Long COVID: assessing work ability, adapting the workplace and supporting rehabilitation. A practical short guide for the workplace
(This is another document from the post above, I'm just highlighting its content here):

 

No it must not. Deconditioning is inevitable when you live with PEM. It should never be prioritised over avoiding PEM.

 

I am so fed up of the defaulting to rehab and exercise as if its some sort of common good that can not be skipped. When you don't have enough energy to live and work you don't have extra to be putting towards swimming, that energy comes out of something else and if your at the stage of just being able to work with accommodations that swimming is going to knock most of work off the list. They have no evidence to suggest any of this is necessary for PEM sufferers and plenty of evidence to show that it harms.

 

It pretty much just ignores the moderate to severe end, only ever speaking of the mild cases. In the end it promotes misinformation because it gives a very distorted picture of how bad things can get. Physicians aren't informed of this, and so entirely discount the possibility. Which only solidifies the problem, since most of the relevant information is never recorded: doesn't exist as far as they know.

Basically it's not much different than a society that simply does not recognize or take into account disability. Most people are fine, able to function and work, so there is no need to consider anything for those who can't. It's like an odd form of majority rule, except it's an imposed rule, from above, by people who don't understand the problem and misinform themselves, first, their patients, and society as a whole, including governments.

It's this damn toxic positivity. They don't want to speak of the worst cases, possibly because they genuinely believe that they only happen through beliefs, even though it's never mentioned and happens anyway, but they don't know that, because almost no clinical description mention any of it. Just far too detached from reality to be helpful.

Almost all the good advice is ruined because of this, in the end it still mostly works through a lottery system where if you lose, sucks to be you, don't care, and they actually managed to make it break even, by recommending both pacing and GET. Good grief, professionals are never supposed to be this bad at anything.