ME Action: The EU committee on petition is preparing a resolution on ME

Michiel Tack said:
looks like a great press release
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One issue which that has been noted is the figure of 32 million for economic burden, which comes from the EUROMENE website. This seems far too low (if you assume 2 million patients, it would mean an average economic cost of 16 euro per patient).

In its most recent publication, the EUROMENE group working on economic burden wrote:

"In terms of the rationale for a socio-economic work package, we estimated that the annual burden of ME/CFS in Europe, on the basis of extrapolation from UK estimates [14], could be in the region of € 40 bn if the prevalence and cost burden associated with each case were similar to those found in the UK. Therefore, even a modest 1% reduction in the overall burden could deliver cost savings of around €400 million/year."​

See: https://www.ncbi.nlm.nih.gov/pubmed/32272608
 
Michiel Tack said:
One issue which that has been noted is the figure of 32 million for economic burden, which comes from the EUROMENE website. This seems far too low (if you assume 2 million patients, it would mean an average economic cost of 16 euro per patient).

In its most recent publication, the EUROMENE group working on economic burden wrote:

"In terms of the rationale for a socio-economic work package, we estimated that the annual burden of ME/CFS in Europe, on the basis of extrapolation from UK estimates [14], could be in the region of € 40 bn if the prevalence and cost burden associated with each case were similar to those found in the UK. Therefore, even a modest 1% reduction in the overall burden could deliver cost savings of around €400 million/year."​

See: https://www.ncbi.nlm.nih.gov/pubmed/32272608
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The press article has been updated with the estimate of EUR 40bn/year and it links to the EUROMENE study. Great & quick response from the press officer Yasmina Yakimova.
 
Michiel Tack said:
One issue which that has been noted is the figure of 32 million for economic burden, which comes from the EUROMENE website. This seems far too low (if you assume 2 million patients, it would mean an average economic cost of 16 euro per patient).

In its most recent publication, the EUROMENE group working on economic burden wrote:

"In terms of the rationale for a socio-economic work package, we estimated that the annual burden of ME/CFS in Europe, on the basis of extrapolation from UK estimates [14], could be in the region of € 40 bn if the prevalence and cost burden associated with each case were similar to those found in the UK. Therefore, even a modest 1% reduction in the overall burden could deliver cost savings of around €400 million/year."​

See: https://www.ncbi.nlm.nih.gov/pubmed/32272608
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The widely used total cost for m.e in the UK is £3.3b although I think that earlier studies suggested double that (I couldn’t understand the figures in the [14] reference above). There’s 65m population in the UK and 730m in Europe. That’s about ten times more and their estimated cost to economy is about ten times more. edit I note they have 32 million as cost figure, I assume that’s supposed to be billion that is the error, then the figures tie up roughly with uk figures.

In the U.K. Alzheimer’s society were arguing dementia/Alzheimer’s should get 1% of the cost to economy invested in biomedical research , so they wanted £300m/ year and have got about £160-80m now.
 
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Cinders66 said:
The widely used total cost for m.e in the UK is £3.3b although I think that earlier studies suggested double that (I couldn’t understand the figures in the [14] reference above). There’s 65m population in the UK and 730m in Europe. That’s about ten times more and their estimated cost to economy is about ten times more. edit I note they have 32 million as cost figure, I assume that’s supposed to be billion that is the error, then the figures tie up roughly with uk figures.

In the U.K. Alzheimer’s society were arguing dementia/Alzheimer’s should get 1% of the cost to economy invested in biomedical research , so they wanted £300m/ year and have got about £160-80m now.
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Your explanation sounds plausible to me i.e. since I think the same approach was used to estimate the prevalence in the EU (2 million people) - multiply incidence in UK (225k by 10). Derek Pheby, the first named author of the 2020 study* you refer to*, advised us (I part of the group working on the petition) that the prevalence figure for the EU could be estimated from the figure for the UK.

I think that it's difficult to get data for some EU countries ,e.g. Romania, since they don't recognise/diagnose ME
 
obeat said:
@Michiel Tack Do we need to lobby our MEPs for the next vote?
Will your charity be producing a template letter?
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Hi @Michiel Tack will probably give a better reply. Basically just contact the MEPs on the PETI Committee and the leaders of the political parties these MEPs are affiliated to. I was surprised to hear that it's very unusual for everyone to vote for a resolution (30 out of 32 with no obstentions/votes afainst). Apparently the vote of the whole EU Parliament (plenary) should follow the view of parliaments (PETI) Committee - seems positive.

Dorothee should be posting on the Facebook page* i.e. with advice on what to do next --- thank them seems to be the key message. There may be a template letter ---.

*apply to join if your wish to - "#MEAction European Union (EU)"
 
obeat said:
@Michiel Tack Do we need to lobby our MEPs for the next vote?
Will your charity be producing a template letter?
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Yes the plan is to contact MEPs and provide template letters for other patients who would like to join in, but it's a bit soon now because we don't know yet when the vote in the plenary will take place. Will certainly keep you posted. If anyone is interested I can recommend the #MEAction European Union (EU) Facebook group which is where we first share and discuss news about the EU projects.

Just one clarification: European ME Coalition (EMEC) isn't a registered charity. We're merely an advocacy group for ME at the European level organized around Evelien and Francis and their successful petition.
 
Research involving Bangor University with relevance full recovery for Covid-19 patients cited by European Parliament
Research by Professor Dyfrig Hughes of the Centre for Health Economics and Medicines Evaluation in School of Health Sciences into the economic impact of chronic fatigue syndrome (CFS) - also known as myalgic encephalomyelitis (ME) – was published recently in the journal Healthcare. It has been picked up and cited by the European Parliament in their decision to support increased biomedical research funding for ME/CFS.

Prof Hughes, delighted that this research was having an impact on the European stage commented:

“The research was undertaken as part of the European Network on ME/CFS (EUROMENE) and identified that the annual burden of ME/CFS in Europe could be in the region of €40 bn. The report made recommendations for future research directed at assessing the economic impacts of ME/CFS. This is particularly important in relation to the current global pandemic given the likely high incidence of post-viral fatigue syndrome in Covid-19 survivors.”

Publication date: 7 May 2020
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https://www.bangor.ac.uk/human-scie...9-patients-cited-by-european-parliament-43620
 


1) On 17 June the European Parliament plans to vote on the ME/CFS-resolution (2020/2580(RSP). Hope this will be an important day for ME/CFS patients across the continent.
https://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/PETI/RE/2020/04-30/1200263EN.pdf

2) You can contact the members of parliament (MEPs) from your country to ask them to vote for the ME-resolution. https://www.europarl.europa.eu/meps...AcP55KuAsMgPqzBtDtWWYEsU58cy-AzQyDlIJJ3U9_kwI

3) Some suggestions: keep the letter short and polite, focus on your personal story or how much the resolution means to you, avoid strong claims and controversial issues that require long explanations.

Many thanks in advance!
 
Michiel Tack said:


1) On 17 June the European Parliament plans to vote on the ME/CFS-resolution (2020/2580(RSP). Hope this will be an important day for ME/CFS patients across the continent.
https://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/PETI/RE/2020/04-30/1200263EN.pdf

2) You can contact the members of parliament (MEPs) from your country to ask them to vote for the ME-resolution. https://www.europarl.europa.eu/meps...AcP55KuAsMgPqzBtDtWWYEsU58cy-AzQyDlIJJ3U9_kwI

3) Some suggestions: keep the letter short and polite, focus on your personal story or how much the resolution means to you, avoid strong claims and controversial issues that require long explanations.

Many thanks in advance!
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I just went to look for my MEPs and then realised we are no longer in the EU. I had forgotten. It's been that sort of year.
 
One person has just sent me this.
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EU Resolution vote 2020/2580 (RSP) on 17th June

Dear Tom,

Hope this finds you well.

I have emailed every single Irish MEP re the above vote. I found a
quick way to track down the emails of all of the MEPs using the link
below, it may be useful for people to get their letter sent:

https://www.europarl.europa.eu/meps/en/full-list

All the MEPs are listed in alphabetical order, with their full email
and other contact details, so it's very convenient.

I was heartened to hear a reply from one MEP, (within ten minutes of
sending it!), from Clare Daly, and I am not even in her constituency -
she says she appreciated being informed about the vote as she and her
staff deal with a listing of thousands of scheduled votes apparently,
so she appreciated getting the heads up on this one.

So I think it is worth the effort contacting the MEPs!

Kind regards.
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Another message from this person:
---
Thanks Tom.

Mairéad McGuinness’s PA has also responded since-nobody else so far,
but I was impressed by the prompt response from those two MEPs anyway.

Regards.
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