Europe: News from the European Union and the European Parliament

Sly Saint · Jul 20, 2023

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

Wyva · Jul 13, 2023

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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Wyva · Jul 20, 2023

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

Wyva · Jul 13, 2023

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.

Wyva · Jul 13, 2023

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.

Wits_End · Jul 14, 2023

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.

SNT Gatchaman · Sep 7, 2023

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 · Sep 7, 2023

SNT Gatchaman said: ↑

Sunak hails ‘right deal for country’ as UK rejoins EU Horizon project
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https://twitter.com/user/status/1699701425343787241

FMMM1 · Nov 19, 2023

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

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

FMMM1 · Nov 18, 2023

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?

Dolphin · Dec 13, 2023

https://twitter.com/user/status/1734919007533244711

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