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

Thanks for picking this up Kalliope, looks like a great press release (I've sent an email about the spelling mistakes though, hope they will be corrected soon).

 

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

 

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.

 

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.

 

Excellent!

Let's keep stepping forward, the best fix to 3 decades of being forced backwards by quacks and charlatans.

 

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

 

@Michiel Tack Do we need to lobby our MEPs for the next vote?
Will your charity be producing a template letter?

 

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)"

 

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.

 

https://twitter.com/user/status/1256249993494700039

 

Research involving Bangor University with relevance full recovery for Covid-19 patients cited by European Parliament

https://www.bangor.ac.uk/human-scie...9-patients-cited-by-european-parliament-43620

 

Interesting. Thanks for picking this up @Sly Saint ! You're really good at finding ME/CFS news.

 

as you are at helping to create it!

 

https://twitter.com/user/status/1269238656914657280


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!

 

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.

 

Me too. :-/

 

One person has just sent me this.
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Another message from this person:
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I've now written to my 4 MEPs.

 

Without getting into a debate on the Brexit issue, it would have been good to have the UK as part of the EU for this vote. More people are actively interested in ME and CFS advocacy in the UK than in most if not all countries in the world.

 

Ming Flanagan wrote back to tell me he would support it. Waiting to hear from 3 others.