Europe: News from the European Union and the European Parliament

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’,

29. Recalls that 65 million people worldwide and, according to the WHO, at least 17 million people in Europe suffer from post-acute sequelae caused by SARS-CoV-2 (PASC), while similar post-acute infection syndromes (PAIS) have also been observed as a result of other diseases; highlights that all PAIS including PASC have symptom clusters in common, in particular that they can lead to ME/CFS, while in some patients the same symptoms occur after vaccination (Post Vac);

30. Notes that patients suffer from systemic multi–organ impairment conditions that are often misdiagnosed as psychosomatic and that post-exertional malaise is a key symptom of ME/CFS, but has also been observed in a number of PASC patients, which is why pacing needs to be respected; points out that patients urgently need diagnoses and treatment, which is why targeted research funding of translational and clinical research and ensuing pivotal studies are needed; recalls that women suffer significantly more often from PASC and that all age groups, including children and adolescents, are affected; recalls that PAIS is also a threat to the economy, as prolonged illness prevents people from returning to the labour market and increases their risk of economic hardship; points out, in the light of future pandemics, that a PAIS strategy is needed that comprehensively addresses the threat of chronic disease after an infection;

31. Highlights that autoimmune diseases in general are poorly understood1 and that PAIS 1 Bender, M. et al., ‘The Terrible Toll of 76 Autoimmune Diseases’, Scientific American, Vol. 325, No 3, 2021, pp. 31-33. are largely ignored as well1 ; notes that the DNA aptamer drug BC 007 is addressing autoimmunity and has been successful in healing long COVID in a small study at University Hospital Erlangen and that BC 007 has a high affinity to G-protein-coupled receptor binding autoantibodies with the effect of neutralising theses autoantibodies2 ; recalls that financing for the phase II(b) clinical trial is lacking;
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(c) COVID, communicable and non-communicable diseases; addressing PASC as part of an EU PAIS strategy

201. Expresses concern about the high prevalence of PASC, and observes that the risk factors for developing PASC, its pathophysiological mechanisms and its long-term impact are still being researched;

202. Underlines that, while research is ongoing, the research available implies that long COVID and Post Vac have a similar pathogenesis, as the spike protein of the virus plays a key role, and that both can lead to ME/CFS;

203. Recalls that PAIS now occur much more frequently after COVID-19 infections in the form of PASC, but are also known to result from other bacterial, viral and parasitic infections; underlines the benefit of taking a broader view on research and treatment of PAIS;

204. Highlights that the EU needs a strategic approach to address PASC, focusing on increasing research, training and primary care awareness;

205. Recalls the scientific findings related to PASC and the need for public authorities to concretely support and help people suffering from it, using adequate resources and policies;

206. Recommends the development of meaningful dedicated and targeted research, EU-wide translational research and clinical trials, with view to concrete diagnoses and treatments (other than mainly observational studies) and the exchange of comparable data, experiences and best practices among Member States; recommends enhanced coordination at European level for research on PASC;

207. Calls for the establishment of a common definition, biobanks, reference centres and registries, including a vaccination register with improved pharmacovigilance based on clear EU standardised reporting duties, to address the effects of PASC and severe adverse effects of vaccination adequately;

208. Calls for the recognition of PASC as an occupational disease for healthcare and social care workers;

209. Calls for adequate funding for basic research, as well as for translational research and clinical trials, such as pivotal studies on promising substances, with the meaningful and high-quality involvement of PASC patients to align research priorities with patients’ needs; advocates sufficient resources to design and develop adequate treatments;

210. Calls on the Member States to facilitate support, including telemedicine, home-based outpatient care service and doctors' home visits for families or persons with the double burden of working and taking care of a child, adolescent or parent, and for house-bound or bed-bound persons with care-intensive needs, such as post-exertional malaise in general;

211. Recognises the importance of certified multidisciplinary outpatient clinics and rehabilitation centres for PASC patients across EU countries that take the specific needs of PASC patients into account, including post-exertional malaise, among other things, and that apply the latest evidence; encourages the development of targeted educational programmes in the medical sector and large-scale public awareness campaigns on the existence of PASC as a serious disease in order to reduce stigma; notes that women suffer significantly more often from PASC and are particularly prone to being misdiagnosed as psychosomatic, which is not only stigmatising but can also lead to harmful treatment;

212. Urges the EU and its Member States to address the long-known issue of misdiagnosing PASC, Post Vac and ME/CFS patients as psychosomatic;

213. Is concerned that the mildness of symptoms has contributed to less diagnostic testing and to therefore the detection of fewer cases of COVID-19 in children; calls for a registry of children and adolescents with symptoms of persistent COVID-19, along with appropriate follow-up to minimise the effects of the disease;

214. Calls for the EU and its Member States to take PASC infections in children seriously, in particular the risk of developing long-term disability, by addressing special educational and developmental needs and developing support structures such as homeschooling;

215. Urges the EU and its Member States to consider long-term consequences when deciding on measures or ending restrictions, particularly for the most vulnerable populations;

216. Calls for more research to determine the underlying causes, frequency and best treatment options for PASC, including long COVID, post-acute COVID-19 syndrome, Post Vac and other PAIS and the long-term consequences such as developing ME/CFS and exchanging experiences and approaches in order to address the impact of its effects;

217. Requests the establishment of an EU network of experts on these diseases with coordinated surveillance systems, including data disaggregated by different subgroups from each Member State, including in ORs and OCTs, using consistently defined cases and methodologies and encompassing the impact of these conditions on health, employment and the economy;

218. Emphasises the need for additional funding and prioritised calls for projects focused on biomedical research on PASC and for better recognition of PASC, including research on adverse vaccination effects at Member State level;

219. Calls on the Commission to use Horizon Europe funding for dedicated and targeted PASC research and to aim for cooperation with the pharmaceutical industry and the European Partnership on Rare Diseases to fund long COVID research;

220. Stresses the importance of providing adequate assistance and support to people suffering from PASC, including Post Vac patients; calls on the Member States to provide appropriate support for those whose daily lives or ability to work have been affected in order to mitigate PASC as a poverty trap;

221. Acknowledges the need for improved medical education and training for health and social care professionals working with PASC and for the inclusion of ME/CFS within the European Reference Network for Rare Neurological Diseases;

222. Urges the Commission, the Member States and manufacturers to be transparent about the potential side effects of vaccines, including known side effects identified by the EMA, and to communicate about this, as well as about the benefits and efficiency of vaccinations, which prevent millions of deaths and severe clinical disease, in a consistent, comprehensive and coordinated way, guaranteeing the safety of patients, by, among other things, calling on the EMA to publish guidelines for aspirating vaccines in order to avoid adverse effects;

223. Is convinced that full transparency, the recognition of adverse effects and solidarity with patients is the best way to counter vaccine hesitancy, misinformation, and disinformation;
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Research:

298. Calls on the Commission to make post-acute infection syndromes (PAIS) a priority and to develop an EU PAIS strategy, comparable to Europe’s beating cancer plan and the EU strategy on mental health and address PAIS in the global health strategy; calls for the EU and its Member States to take as much effort to find a cure for PAIS patients as they took for vaccine development;

299. Calls for more research to determine the underlying causes, frequency and best treatment options for PASC, including long COVID, post-acute COVID-19 syndrome, Post Vac and other post-infectious diseases and research into their long-term consequences such as developing ME/CFS, as well as for the exchange of experience and approaches to addressing the impact of their effects; requests the establishment of an EU network of experts on these diseases with a coordinated programme of surveillance systems, including data disaggregated by different subgroups from each Member State, including in the ORs and OCTs, using consistent case definitions and methodologies and encompassing the impact of these conditions on health, employment and the economy; emphasises the need for additional funding and prioritised calls for projects focused on biomedical research into PASC and for better recognition of PASC at Member State level;

300. Calls on the Commission to use Horizon Europe funding for dedicated and targeted PASC research, including cooperation with pharmaceutical industry, on a scale allowing the development of a series of diagnostic tools, financing pivotal studies and developing drugs that address the different symptom clusters and the European Partnership on Rare Diseases; highlights in this regard that even viruses that do not seem very serious can sometimes lead to severe diseases years down the line; underlines that prevention is better than cure and therefore reiterates the need to encourage and fund research to create vaccines that provide sterile immunity, which would not just treat the disease but would most importantly prevent infections, avoiding any potential long-term problems;

301. Reminds the Member States of the importance of providing adequate assistance and support to people suffering from PASC, including long COVID in extending sickness allowances, facilitating access to social benefit schemes as well as compensation for Post Vac patients in order to mitigate PASC as a poverty trap, including appropriate support for those affected in their daily life or work capacity; acknowledges the need for improved medical education and training for health and social care professionals working with PASC and the inclusion of ME/CFS within the European Reference Network for Rare Neurological Diseases (ERN);
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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
 
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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.
 
Sunak hails ‘right deal for country’ as UK rejoins EU Horizon project

The UK is to return to the flagship Horizon Europe science research programme, Rishi Sunak has confirmed.

The prime minister said that from today, British scientists can apply once again for grants from the £85bn programme, a move that will be welcomed with jubilation from the science community in the UK which was once one of the leading beneficiaries of the fund.
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FMMM1 said:
"#longcovidtrials design workshop organized by #EMA - Nov 17

unofficial summary-
first post here -
https://www.facebook.com/profile.php?id=100004784809047
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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

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(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."

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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:

5.2.2 Post-exertional symptom exacerbation

 Definition: Post-exertional symptom exacerbation (PESE) or post-exertional malaise (PEM), is defined as the worsening of long COVID symptoms, typically 12 to 72 hours after performing cognitive or physical activities that were previously tolerated.

 What the worker needs to know: PEM leads to symptom worsening that lasts for days or weeks and may be responsible for long COVID symptom relapse or fluctuation. When workers try to do too much on a ‘good day’ to make up for lost time, this effort can lead to relapse.

 Self-rehabilitation: The main consideration is for the worker to determine their ‘energy envelope’ (CDC, 2024a and b) or energy limits for physical activity and adjust their daily routine activity.
Patients need to determine their individual limits for mental and physical activity, and plan activity and rest to stay within these limits. Limitations may be different for each patient. Keeping individual activity and symptom diaries may be helpful for patients to identify their personal limitations (CDC 2024b). Patients should work with their doctor and other healthcare specialists to determine effective exercise regimens.

 Specialist rehabilitation: The first consideration should be to do no harm. Intense activity, especially aerobic, may do more harm than good; activity must be balanced against prolonged inactivity, that will lead to muscle deconditioning.

 Workplace adaptations: Increased physical burden, especially work-related, will only serve to prolong and establish PEM in patients. A phased return to work plan, with a self-adjustable burden, will be of immense help and support the worker’s long-term recovery and restoration of their work
ability.

5.2.3 Orthostatic intolerance

 Definition: Orthostatic intolerance refers to blood pressure and heart rate variability when standing upright. It can include additional symptoms such as temperature dysregulation, excessive sweating, lightheadedness, chest pain and loss of consciousness.

 What the worker needs to know: Sitting upright for prolonged periods of time may be especially harmful, as orthostatic intolerance may evolve into loss of consciousness.

 Self-rehabilitation: Exercise training, increasing salt uptake in foods and getting up slowly are among the easiest to implement measures. Self-assessment and self-care advice is also available online (for example Mayoclinic; CDC 2024b)

 Specialist rehabilitation: Orthostatic intolerance may not only involve blood pressure and should prompt further medical investigations for potential cardiovascular problems. Furthermore, if PEM is also present, exercise regimens may need to be modified.

 Workplace adaptations: Orthostatic intolerance may require workplace modification to prevent severe OSH risks. Workers working at heights and/or on uneven floors or surfaces may be at an increased risk of falling. Workload modification to minimise time standing, with frequent breaks, and the possibility to telework, could also be considered.
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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):

Post-exertional symptom exacerbation

Post-exertional symptom exacerbation or postexertional malaise (PEM) is the worsening of long COVID symptoms, typically 12 to 72 hours after carrying out mental or physical activities that were previously tolerated. PEM leads to symptom worsening that lasts for days or weeks and may be responsible for long COVID symptom relapse or fluctuation. Practically, this means that the more you attempt to do, the worse you get.

Workers should be able to determine their ‘energy envelope’ or energy limits for physical activity and adjust and plan work activity and rest to stay within these limits. Limitations may be different for each person affected by long COVID. Workers whose symptoms worsen with exercise may need help from healthcare specialists or occupational physicians in determining what works for them.

Rehabilitation may include swimming, Pilates, yoga, functional training, and exercises for flexibility and mobility. Workers may need accommodations to be able to attend such training.

Increased physical burden, especially work-related, will prolong PEM in workers. A phased return-towork plan, with self-adjustable burden, will be of immense help and support the worker’s long-term recovery.

Orthostatic intolerance

Orthostatic intolerance refers to blood pressure and heart rate instability when standing upright. Other symptoms may be temperature dysregulation, excessive sweating, lightheadedness and chest pain.

Orthostatic intolerance may also be accompanied by other symptoms such as gastrointestinal problems and heat intolerance.
Standing upright from a sitting or prone position, especially for prolonged periods of time, may be especially harmful, as orthostatic intolerance may result in dizziness or even loss of consciousness.

Getting up slowly from a sitting or lying position is among the easiest to implement measures to deal with orthostatic intolerance.9 In cases of low blood pressure after standing up (known as orthostatic hypotension), additional measures can be effective:

 Hydration: this means that during days when orthostatic hypotension is worse, the worker should drink plenty of water. Access to drinking water at work is therefore essential.
 Tailored physical exercise and improving fitness will alleviate symptoms.

Workers working at heights and on uneven surfaces may be at an increased risk of falling. Workload and task modification to minimise time standing, breaks between long periods of standing and the possibility to telework should be considered.
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Specialist rehabilitation: The first consideration should be to do no harm. Intense activity, especially aerobic, may do more harm than good; activity must be balanced against prolonged inactivity, that will lead to muscle deconditioning.
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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.
 
BrightCandle said:
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.
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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.
 
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