Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Lobbying for funding for ME/CFS research - they're working for you

Discussion in 'Action Alerts and Advocacy' started by FMMM1, Sep 16, 2018.

  1. FMMM1

    FMMM1 Senior Member

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    THE FOLLOWING POSTS HAVE BEEN MOVED FROM the EXTRACORPOREAL PHOTOPHORESIS THREAD BECAUSE THEY INTRODUCE A NEW TOPIC ABOUT LOBBYING FOR ME/CFS RESEARCH FUNDING


    Hi, I've been trying to "force the system" in France and the rest of the European Union.

    I live in part of the United Kingdom (UK); the UK is associated with classifying ME/CFS as a psychological illness as well as PACE. Recently a group in Oxford and Newcastle Universities showed that Single Cell Raman Spectroscopy is a potential biological diagnostic test for ME/CFS. Ron Davis presented other potential biological diagnostic techniques at the Invest in ME Conference (London June 2018). I assume Ron will present this at the OMF Community Symposium in a few weeks.

    If there's a biological diagnostic test then potentially your doctor can use that as a basis to consider using off label treatments (drugs, IVIG---). Ron Davis pointed out that you could potentially filter out the compound in your blood which affects the cells; potential treatment?

    The European Union (EU) has funded the development of a diagnostic test for Lyme disease. Here's a draft European Parliamentary question asking that they fund the development of a diagnostic test for ME/CFS [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461]. I've asked a Member of the European Parliament (MEP) to ask this question.

    It is possible to get European Parliamentary questions asked. I was involved in this one regarding funding for ME/CFS [Google E-006901/2017]. I'm not sure that there's even been one other question. ME/CFS got zero funding from the 70 Billion Euro EU Horizon 2020 fund. Lyme disease got millions for the development of a diagnostic test etc.

    No offence intended (this applies to me as well) but we could try to talk to those who can fund research, the development of diagnostic tests etc. as well as those with ME/CFS and their families. Would you/any other reader ask their MEP to ask this question/a question [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461]. Don't know the American system but possibly congress/representatives.

    Regards and lets try to force the system (the EU has 70 Billion Euro in its Horizon 2020 fund).
     
    Last edited by a moderator: Sep 19, 2018
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  2. Moof

    Moof Senior Member

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    UK
    Thank you, will do!
     
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  3. FMMM1

    FMMM1 Senior Member

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    Thanks for your reply. If you search the database of European Parliamentary questions (try something like "Fibromyalgia" or "lyme") then you may find an MEP with an interest [http://www.europarl.europa.eu/plenary/en/parliamentary-questions.html].

    I was writing in English so the only MEP who responded was English [Alex Mayer (S&D) - who asked question E-006901/2017]. I assume that the French MEPs etc [who didn't respond to my requests] are more likely to respond to yours.

    We (i.e. users of this site) could try to come up with questions.

    Also, if we could identify those with an interest in all European Union countries then that might increase our chances of putting pressure on the European Union to fund research/development of diagnostic tests.Others have been successful e.g. Lyme disease seems to have got much more attention (European Parliamentary questions) and funding.
     
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  4. Vassie

    Vassie

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    @FMMM1 Unfortunately the link doesn’t work.
    I’d be happy to write, but I’m not sure how to proceed.
    The information I read about Horizon 2020 was written for scientists. They can ask for funding for their project. The problem is that I, as a patient, don’t know of any specific projects being undertaken in Europe at the moment. Except in the UK, but this will probably not get funded because of brexit.

    I don’t know if a general question for funding for the discovery of a diagnostic test would work. If so, I will write.
     
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  5. FMMM1

    FMMM1 Senior Member

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    Hi Vassie. Firstly thank you very much for your post.

    Basically you are asking your Member of the European Parliament (MEP) to ask that the European Parliament/European Commission fund --- research into ME/CFS --- development of a biological diagnostic test ---- You are not filling in an application for research funding, i.e. science bit, you are lobbying.

    There are different ways to look at the problem e.g. exclusion of women (80% of those who have ME/CFS). The European Commission has policies on things like exclusion/equality/promoting health/--.

    The European Union funded the development of a diagnostic test for Lyme disease. They've also funded research into Lyme disease i.e. beyond the development of a diagnostic test. If you search the European Parliament website for something like "Lyme" then you can see examples of questions [http://www.europarl.europa.eu/plenary/en/parliamentary-questions.html].

    I checked the website a moment ago and there's a question waiting for answer on ME/CFS [Google E-004360-18]. This refers to the need to fund the development of a diagnostic test. The second question on ME/CFS wow!

    Once you've got an MEP to ask a question then a (European Commission) researcher will have to review the issue (science/feasability etc.). E.g. look at the publication from Oxford and Newcastle Universities who recently showed that Single Cell Raman Spectroscopy can be used to separate people with ME/CFS from healthy controls [possible diagnostic test]. Then they (European Commission) will respond. Don't worry about not knowing enough science etc. the key thing is to try to get support. We might be able to work together on this forum to come up with questions etc.

    Draft Question (here's an initial attempt):
    “There are approximately 1 million women in the European Union who have ME/CFS. Many are unable to lead normal lives e.g. to study/work or otherwise participate normally in society.
    Currently there is no biology based diagnostic test for ME/CFS and many women with ME/CFS find themselves labelled as having a functional disorder/hysteria.
    Ron Davis (Stanford University) recently presented data showing biological based methods which separate people with ME/CFS from healthy controls [Invest in ME Conference - London 2018]. Researchers at Oxford and Newcastle Universities recently showed that Single Cell Raman Spectroscopy can be used to separate people with ME/CFS from healthy controls. These methods could be the basis of a biological diagnostic test for ME/CFS and provide the impetus for research to understand the disease and treatments.
    Will the Commission investigate the currently available biological based methods which separate people with ME/CFS from healthy controls and consider funding the development of a biological based diagnostic test for ME/CFS?“
     
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  6. Vassie

    Vassie

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    Thanks FMMM1

    I found one question regarding ME/CFS and the Commission’s response to that:


    Parliamentary questions
    18 December 2017
    E-006901/2017
    Answer given by Mr Moedas on behalf of the Commission

    The Commission is aware of the study on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) referred to by the Honourable Member, which was published in the scientific journal PLOS One(1). As a matter of policy, the Commission does not assess the results of individual research projects that do not relate directly to its funding activities.

    Neither is the Commission in a position to comment on budget allocations by third party research funding agencies, although it is in a regular contact with some of them, such as the US National Institutes of Health (NIH) or the Canadian Institutes of Health Research (CIHR).

    To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation. However, the project GLORIA(2) is investigating the pathophysiology of chronic pain conditions including fibromyalgia.

    Horizon 2020, the framework Programme for Research and Innovation (2014-2020)(3), provides opportunities for supporting research on ME/CFS, fibromyalgia as well as other neuro-immunological disorders, including better diagnostics and care. The bottom-up approach of the Horizon 2020 calls for proposals provides applicants with freedom in the choice of their investigations. More information can be found at the Research and Innovation Participant Portal(4).



    [​IMG]
    (1) http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0186802
    (2) http://gloria.helsinki.fi/?page_id=168
    (3) https://ec.europa.eu/programmes/horizon2020/
    (4) http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/index.html


    ..........

    So I think they are saying they only fund specific projects and researchers can apply for funding. My impression is that the funds are there. There are just no projects. There is simply no scientific research being done and they can’t fund what’s not there.
    I could be wrong though! Please let me know your thoughts.

    Maybe this should have a thread of its own?
     
  7. FMMM1

    FMMM1 Senior Member

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    Yea. I was involved in drafting that question. I think a draft question I circulated may be the basis for the second question on diagnostic test etc. (it's due to be answered - not sure how may days the have to answer).

    The Commission has funded projects to develop a diagnostic test for Lyme [2 million euros - see below*]. I think they specifically asked for applications for the development of a diagnostic test for Lyme using ----. So I think the response from the Commission may be a little selective i.e. suggesting that the route is that researchers fill out an application for their particular area of interest and they select the best. I.e. the Commission also asks for specific research applications in area X, Y, Z --. So the Commission could ask for applications to develop a diagnostic test for ME/CFS e.g. using Raman Spectroscopy and allocate a budget of 2 million euros (Lyme approach). Watch a bit of the British comedy "Yes Minister" and you'll get an idea of the creative ways officials have of getting rid of troublesome people i.e. those who request that they do X, Y or Z. We couldn't possibly do ----.

    To me the Lyme project required these elements to be in place:
    1) an acceptance that there is a problem [i.e.inability to diagnose reliably using existing methods],
    2) a view that there are now methods which could deliver a reliable test, and
    3) a political will to do this i.e. put the money in. Not doing it was politically unacceptable.
    I personally think we're stuck at the later i.e. a willingness to fund the development of a test. I also think this is where we come in i.e. we need to try to influence. This forum is accessed by people with ME/CFS (and family members), who can read English, in all of the European Union member states. We should be able to find people willing to contact Member of the European Parliament in all member states.

    I think your right about a separate thread; could you set it up (outside my technical competence)?



    Some extracts regarding European Union funding for the development of a Lyme test:

    1) [https://www.id-lyme.eu/]

    The ID-Lyme project is all about making a novel test for the early detection of Lyme Borreliosis available to medical professionals and patients.

    This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 720480.

    2) Two million euro for European Lyme Borreliosis innovation - id-lyme
    https://www.id-lyme.eu/.../two-million-euro-for-european-lyme-borreliosis-innovation...
    11 Mar 2016 - The ID-Lyme project has received funding from the European Union's Horizon ... and innovation programme under grant agreement No 720480.
    This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 720480

    There's a lot more on the web and it really seems to reflect our position --- no reliable test --- technology now available to deliver test -- apart from the fact that they have been successful in lobbying.

     
    Last edited: Sep 18, 2018
  8. Vassie

    Vassie

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    Hi FMMM1
    I asked a moderator to create a new thread.

    I understand your approach.
    And I like your idea to find a patient in every member state to write to their representatives.

    I think we need a very good letter with concrete ideas for innovative research, with examples of what is being done elsewhere. To make clear that there are enough opportunities, it just needs to be done and that requires funding. Correct?
     
  9. FMMM1

    FMMM1 Senior Member

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    Yes correct i.e. take something like:
    pestle
    political - you need political support. That's really all the Lyme folks had that we don't have. Anyone can get Lyme/I could get Lyme/it's a terrible illness - something needs to be done;
    economic - the economic impact of 1 million people who are unable to live normal lives, work etc [data sources];
    social. Social exclusion/inclusion one of the reasons the European Commission will fund programs [we need to check all the criteria]. Equality, 80% are women i.e. equality issues. Issue of fairness too which links to political (above) focus on women/womens issues/equality; focus on female Members of the European Parliament (MEP);
    technological. The technology is now there i.e. a diagnostic test is deliverable (e.g. just check out the Raman Spectroscopy study by Oxford/Newcastle and watch the OMF symposium at the end of the month);
    legal. Possibly there are legal drivers e.g. exclusion of women. Certainly there are no legal barriers to the European Commission funding the development of a diagnostic test [they funded the Lyme test];
    environmntal. Not sure. Back to participation of women from society/normal life?

    Possibly a mind map would be a good way to brain storm this.

    Key point is that it's now realistic to develop a diagnostic test.

    Were only talking about writing email.

    If we can draft an email and get it to those MEPs who have an interest in health/womens issues/disability in particular; but also every MEP i.e. regardless of whether they have a tract record on these issues.

    We also need to train each other. On a forum like this you're gonna have the skill sets (there are a large number of participants). We can pick up stuff from each other and keep hassling until we get lucky i.e. find some support.
     
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  10. FMMM1

    FMMM1 Senior Member

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    Thanks.

    I looked on the European Parliamentary Questions website; search for Lyme.

    Here's the first question [E-004551-18]:
    Rolandas Paksas (EFDD) [Lithuanian]

    "Lyme disease is the most common zoonotic disease in Europe. The number of infected people ranges from between 650 000 and 850 000 [ME/CFS - 1 million]. The number of ticks is increasing, and Lyme disease is occurring in more geographic regions. Many patients do not have access to the treatments that would suit them, nor are they promptly or properly diagnosed [ME/CFS - no access to biological based diagnostic tests].

    Does the Commission intend to introduce EU-wide tick population control measures in order to prevent Lyme borreliosis [action requested]?

    Are there any plans to arrange EU-wide campaigns to educate and raise awareness of this disease, and what measures are taken to ensure that patients are treated properly [measures to ensure people are treated properly]?

    Rolandas Paksas (EFDD)
    Does the Commission intend to announce common prevention guidelines and carry out preventive checks, and provide Member States with proper funding to implement preventive measures properly and to cooperate with each other [all seems good - relevant to ME/CFS]?"

    It's late and I'll come back to this but you can see similarities to ME/CFS. There are 2 pages of questions.

    Anyone from Lithuania on this forum?
     
    Last edited by a moderator: Sep 19, 2018
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  11. Vassie

    Vassie

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    Thanks for your good explanation.

    I’m going to think about this further and see if I can come up with a draft. I think we need to keep our email short and to the point, otherwise it will probably be ignored.

    We could perhaps translate that email and send the MEPs the message in their own language and in English both in one email.

    ETA I completely agree with you that we should try to learn from each other and combine our strengths. If you have good ideas for a text, please share, because you obviously have been thinking about this and working on this for a much longer time than I have.
    I also think we need to try to use the patient networks and structures that already exist. For example OMF has a translation team. Maybe they are willing to help.
     
    Last edited: Sep 21, 2018
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  12. Vassie

    Vassie

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    Hi FMMM1

    Are you aware of the EUROMENE project?

    https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-017-1263-z

    It is supported by Horizon 2020. I think the Commission is going to point to this.

    Aren’t we reinventing the wheel? Maybe it’s better to contact EUROMENE to ask if they are aware of the Raman spectroscopy study. They could apply for funding, if they wanted to do a validation study.

    Looking forward to hearing your thoughts!
     
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  13. FMMM1

    FMMM1 Senior Member

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    Are you aware of the EUROMENE project?

    https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-017-1263-z



    It is supported by Horizon 2020. I think the Commission is going to point to this.

    Aren’t we reinventing the wheel? Maybe it’s better to contact EUROMENE to ask if they are aware of the Raman spectroscopy study. They could apply for funding, if they wanted to do a validation study.

    Looking forward to hearing your thoughts![/QUOTE]

    I had looked at EUROMENE I think/assume that the intention is to have a panel of wise persons (no offence intended Carmen e.g. is an eminent scientists).

    I am more than happy to write to EUROMENE to ask that they review the Raman spectroscopy method.

    Problem?
    If you look on this site you'll find people trying X, Y, Z---. Ron Davis (recollections from a talk a few years ago) highlighted that they thought Whitney was burning proteins as an energy source. In fact the data from the Raman spectroscopy study may well support Ron's view. A potential strategy may be to increase proteins i.e. if you have ME/CFS. So you need a reliable diagnostic test possibly Raman spectroscopy.

    If you got an MEP to ask the European Commission to fund a study to investigate whether e.g. Raman spectroscopy could be used to diagnose ME/CFS then the Commission could as you suggest point to EUROMENE. I.e. the Commission could ask EUROMENE [aka panel of wise persons] to review the study on Raman spectroscopy and report to the Commission. The Commission appears to have asked the European Centre for Disease Prevention and Control (ECDC) to do this in relation to a Lyme question [http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2018-001276&language=FR#ref8]. That looks like an OK outcome to me.

    I assume that the European Commission is responsible for delivering the policy e.g. improving health (reliable diagnosis of ME/CFS - leading to appropriate treatment), reducing social exclusion (ME/CFS) --. The tools it uses e.g. EUROMENE/ECDC are a matter for the Commission. Ultimately the Commission must be able to explain to the European Parliament how it has delivered health policy, social inclusion policy e.g. by it's decisions on funding under Horizon 2020. So they have to be able to explain to an MEP, who raises the issue of diagnostic testing for ME/CFS, how they have addressed the problem.

    I think the response to question E-2017-006901 might illustrate the problems we face [http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2017-006901&language=EN]. I.e. they appear to be saying that you fill in a project proposal and see what happens (general bids) but I assume that they also ask for specific things (e.g. development of a better test for Lyme) and allocate budget. I think this has been referred to as weasel words.

    Maybe we will not succeed i.e. in speeding up the delivery of a reliable diagnostic test/increase funding for research. There were no European parliamentary questions on ME/CFS before I drafted/help draft the question asked by Alex Mayer; similarly the current question (yet to be answered) looks like one I sent to Alex. So we may raise the profile of ME/CFS a little.

    I think we need to try to keep the key charities etc informed of our attempts (e.g. if an MEP agrees to raise the issue/ask a parliamentary question then copy email to them). This looks a bit like a relay race so we better try to get others involved.

    I've a feeling that this will fizzle out without achieving much but let's see.
     
    Last edited: Sep 21, 2018
  14. FMMM1

    FMMM1 Senior Member

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    Hi thanks for your reply. It's late and I'm not sure how this will be received. Here's some comments/random thoughts.

    What does ETA mean?

    I've posted on the OMF blog asking for translators i.e. suggesting they might help [https://forums.phoenixrising.me/ind...eds-your-help-translators.57986/#post-1000442].

    To be really snappy you're either asking for funding for research for ME/CFS or funding for the development of a diagnostic test. I suggest that we ask for funding for the development of a diagnostic test.

    Fairness/unfairness. There's a lot of stuff regarding the election of Trump/Brexit in UK which suggests that this is linked to a perception of unfairness. E.g. EU Membership benefits an elite in London; I live in a post industrial wasteland in the north/midlands of England, we don't get our share.
    If you watch Jan Brae's Ted Talk/film unrest you'll see that those with ME/CFS (80% female) are labelled as having "conversion disorder"/"hysteria".
    The development of a diagnostic test will help to ensure that women (in particular) with ME/CFS are not:
    1) labelled as having "conversion disorder"/"hysteria";
    2) subject to inappropriate treatment e.g. PACE or confined to a psychiatric hospital (Holland/Belgium?).
    If you look at the recent publication on a potential method to diagnose ME/CFS you'll see that people with ME/CFS have a problem producing energy [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract]. I.e. they are suffering from a biological disease not hysteria or other psychiatric condition [I'm not that comfortable with the term psychiatric condition].

    The incidence of ME/CFS has been estimated as at least 0.2% [https://sci-hub.se/10.1039/C8AN01437J]; or 1 million in the 500 million people in the European Union.
    We may be able to generate support, above our numbers, if we go for the unfairness approach.

    I recall a conversation where someone asked what a politician wants to know about the public consultation on X. The answer was that the politician wanted to know whether the decision on X will be controversial, i.e. could loose them votes ---.

    Maybe we need to try to do what the folks involved in Lyme have done. Put the politician in the position that they need to be able to explain that they have delivered. At that stage they will make sure that they exert pressure to deliver a test.

    Hope this helps.
     
  15. Vassie

    Vassie

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    Thank you for your replies!
    I think I’m going to contact EUROMENE first to ask how I can be of help before I take action. I want to make sure I don’t do anything that may have unintended consequences for our cause.

    (ETA means edited to add, sorry for any confusion!)
     
  16. FMMM1

    FMMM1 Senior Member

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    I'd be interested to know how you get on.

    Some general points:
    specific i.e.what are you asking for. E.g. assessment of whether Raman spectroscopy can separate people with ME/CFS from people with similar symptoms [basis for a diagnostic test];
    measurable how would you know that it had been delivered (negative/positive)?
    achievable. Is what your asking for achievable? E.g. test whether Raman is able to separate people with ME/CFS from people with similar symptoms;
    realistic. Is what you're asking for realistic?
    timebound. What timescale is realistic. E.g. if the Commission committed to ask EUROMENE to carry out a review then when will it report?

    Watch Yes Minister/Yes Prime Minister they presumably cover the options for delaying/deferring - not delivering.

    Good luck
     
  17. Vassie

    Vassie

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    Thank you!

    I will let you know how it goes. It may take a while though. I have to take it easy...limited stamina.
     
  18. FMMM1

    FMMM1 Senior Member

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    Hi @Frenchguy I've had a brief look at the questions on the European Parliamentary website i.e. searched for "fibromyalgia" and "Lyme".

    Here are the French Members of the European Parliament (MEPs) who asked questions on "fibromyalgia" or "Lyme". The are problems in diagnosing Lyme disease and fibromyalgia; there is no biological test for ME/CFS. These MEPs might be willing to try to help with ME/CFS. Anyone on this forum/blog who are from France (preferable) or (not from France) would be willing to write to them in french?

    Jean-François Jalkh (ENF) - French - Lyme disease
    Alain Cadec (PPE) - French - Lyme disease

    Problem:
    There are no biological diagnostic tests for ME/CFS.

    Recently scientists in Oxford and Newcastle Universities showed that "phenylalanine can be used as a potential biomarker for the diagnosis of CFS" [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract]. I.e. a blood based diagnostic test for ME/CFS. These scientists are currently carrying out a larger study.

    Currently those who have ME/CFS risk being labelled as having a psychological condition rather than the mitochondrial/energetic dysfunction which this study showed. 1 million people in the European Union suffer from ME/CFS; 80% are female and many feel that they are unfairly labelled as having a psychological condition rather than a biological disease. There is currently also a risk that people with ME/CFS will receive inappropriate treatment e.g. harmful drugs because their diagnosis is incorrect. A biological diagnostic tests for ME/CFS would ensure that people with ME/CFS do not receive the wrong treatment and will speed up the development of effective treatments for ME/CFS.

    Request:
    I would be grateful if you would ask a Parliamentary Question or lobby in some other way for ME/CFS. I.e. ask the European Commission to review existing biological methods, which separate people with ME/CFS from healthy people, to see if they could be used as a diagnostic test for ME/CFS. E.g. scientists in Oxford and Newcastle Universities recently showed that "phenylalanine can be used as a potential biomarker for the diagnosis of CFS".

    Here's the full list of those who've asked European Parliamentary questions on Lyme or Fibromyalgia. Anyone who's from these countries who wishes to try them?

    Beatriz Becerra Basterrechea (ALDE) - Spain - fibromyalgia
    José Blanco López (S&D) - Spain - fibromyalgia
    Rosa Estaràs Ferragut (PPE) - Spain - fibromyalgia
    Takis Hadjigeorgiou (GUE/NGL) - Greece - fibromyalgia
    Takis Hadjigeorgiou (GUE/NGL) - Greece - fibromyalgia

    Committee on the Environment, Public Health and Food Safety (ENVI) - Lyme disease
    Margrete Auken (ENVI) - Denmark - attended European ME Alliance event
    Pilar Ayuso - Spanish (ENVI) - Declaration of the European Parliament on fibromyalgia
    José Inácio FARIA (ENVI) - fibromyalgia
    gerben-jan gerbrandy (ENVI) - Netherlands - fibromyalgia
    Julie GIRLING (ENVI) - British - fibromyalgia and chronic fatigue
    Piernicola Pedicini (ENVI) - Italy - fibromyalgia
    Davor ŠKRLEC (ECR) -Croatia- fibromyalgia

    Rolandas Paksas (EFDD) - Lithuania - Lyme disease
    Liadh Ní Riada (GUE/NGL) - Irish - Lyme disease
    Rory Palmer (S&D) - British - Lyme disease
    Matt Carthy (GUE/NGL) - Irish - Lyme disease
    Adam Szejnfeld (PPE) - Polish - Lyme disease
    Jean-François Jalkh (ENF) - French - Lyme disease
    Alain Cadec (PPE) - French - Lyme disease
    Mairead McGuinness (PPE) - Irish - Lyme disease
    Frédérique Ries (ALDE) - Belgian - Lyme disease
    Mark Demesmaeker (ECR) - Belgian - Lyme disease

    Mrs Helga Stevens MEP European ME Alliance

    @alex3619. Do you know any active members in these countries who may be interested in contacting their member of the European Parliament i.e. to lobby for funding for the development of a diagnostic test? Any views on this technique? "A new approach to find biomarkers in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) by single-cell Raman micro-spectroscopy"

    To those below. Hope you don't mind I'm trying to find members of this forum who might be interested in contacting their member of the European Parliament i.e. to lobby for funding for the development of a diagnostic test?

    @Michiel Tack
    @Garz
    @islander
    @Hip
    @InsomniacNextDoor
    @stigman88
    @Sundancer

    edited to add:

    I've contacted the European Union Committee, they're currently lobbying for increased funding for Lyme, and asked that they lobby for ME/CFS. I am waiting for a response.
     
    Last edited by a moderator: Oct 5, 2018
  19. Vassie

    Vassie

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    Hi FMMM1, I sent an email to Euromene yesterday. If I get a response I’ll let you know.

    You wrote in another thread that you’ve written to the European Union (EU) Committee on the Environment, Public Healthand Food Safety (ENVI). I’m curious what their answer will be!
     
  20. FMMM1

    FMMM1 Senior Member

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    Thanks and good luck with Euromene; it looks like OMF etc. are making progress (Phair* - see below). Lack of funding is the main issue.

    If I get a substantive response from ENVI Committee then I'll get back to you.


    *6.45 on this https://livestream.com/accounts/1973198/ME-CFS-2018/videos/180981460
     
    Vassie likes this.

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