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ME/CFS situation in Spain

Discussion in 'General ME/CFS Discussion' started by NexusOwl, Dec 13, 2016.

  1. NexusOwl

    NexusOwl Spanish advocate

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    I don't think many of you are from Spain, but I believe some of you can understand spanish and quite a few even if they aren't able to understan it, will be interested in seeing how almost total ignorance can destroy the lifes of thousands of pwme in this country.

    You might have seen my last opinion piece in MEaction about the spanish study that said 12 children which only common symptom was "asthenia". I was too foggy and angry at the momment to analyze it the way it should have been, but I'll do it and explain how forgotten and now threatened (thank Crawley again) are children with ME in Spain.
    www.meaction.net/2016/12/10/spain-we-come-in-pace/

    I'll also bring you some research, opinions and videos from the self-proclaimed experts in my country in order you can see the level of unscientificy we are accustomed to and hoping some doctors somewhere around the world would realise how badly Spain needs medical education about CFS/ME.

    I'll start with this interview to Fdez Solá (He has plenty of research you can look after) I will translate to you the most innacurate things he says, but not now, I'm already out of mental energy, but if you know some spanish you can try to follow his blabbering.

     
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  2. slysaint

    slysaint Senior Member

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    We in the UK feel your pain...............for the most part it's the same here and unfortunately has been 'exported'.
    I suggest you try and keep your posts about the situation in Spain in the same thread so that they are easier to find.
    But good things are beginning to happen in other parts of the world........check out some of the other threads on PR.

    buena suerte
     
  3. NexusOwl

    NexusOwl Spanish advocate

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    Well, I'll explain you the problems I see in this interview.

    1. He constantly claims the problem about fatigue in CFS/ME is really a problem with the "fatigue perception".

    2. He conveniently ignores any mention or representation of the immune abnormalitis, in fact he totally changes the concept of "PENE" to "Post-exertional NEUROCOGNITIVE exhaustion"

    3. Practically reduces it to a women's health problem, saying 10x more women are affected than men and claiming they already know why it's like this... in his words "oestrogens sensibilize the brain" and "lower the bar of fatigue perception". (Notice no research was used as reference for this)

    4. He reduces CFS/ME to inespecific fatigue. Even dares to joke when asked if there's a cure, saying something like "No, theres not a cure, if we had a cure for fatigue imagine what we could do! We could give it to our football players and always win, imagine the implications of such a thing in sports or work"...:)grumpy::grumpy::grumpy:) The diagnostic criteria he uses is presence of sudden fatigue, physical or neurocognitive, that affects functionality at least in a 50% and last for at least 6 months.

    5. He is one of the biggest representatns of the "Central Sensibilization Syndromes" theory in Spain, and that explains why he conveniently ignores most of the real research and advances in the definition of this illness, specially the inmune ones. He even comes to mention what I think is IACFSME but he doesn't use the propper name for it, but he doesn't acknowledge any research that is not his, or fits in his reductionist (or simply delusional) definition of CFS/ME as a "central sensibilization" problem.
     
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  4. Cheshire

    Cheshire Senior Member

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    My spanish isn't very good, but what stroke me is that he constantly spoke of "perception" of fatigue. Typical of these "central sensitisation" guys.
    He also clearly said that it was not psychiatric but neurologic, but this "neurology" is not more based on science than the psychobabbles we're used to. I've never seen anything close to convincing showing ME is a perception disorder.
     
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  5. NexusOwl

    NexusOwl Spanish advocate

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    @Cheshire I made some kind of abstract of what worries me more about what he says here, in case you missed it because we were writting the posts at the same time.
     
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  6. slysaint

    slysaint Senior Member

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    Sounds like he'd get on really well with Esther Crawley and gang...............
    I did notice that he only talks about chronic fatigue; a lot of 'them' do; is there a spanish equivalent of M.E. (myalgic encephemyolitis)?
    Are you on any spanish forums? What is the general consensus about the name/s there?
     
  7. NexusOwl

    NexusOwl Spanish advocate

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    The general consensus is Chronic Fatigue Syndrome, but wheneverthey please they can use the term "chronic fatigue". And most doctors won't be able to tell the difference between these too. As you can see, even experts use both terms as if they were the same.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are actually quite a lot of members from Spain but unless they list their country under their avatar, you might not know it. So you have many compatriots here who understand what you are saying.
     
  9. Shakota

    Shakota

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    I think I am understanding the Spanish of the video well enough to say that he seems to be talking about the chronic fatigue (and not chronic fatigue syndrome) associated with fibromyalgia. Or, if he is talking about CFS/ME, then all he does is outline very lightly some of the symptoms. He is talking about fibromaygia and its fatigue because he mentions very early the female predominance of the illness and his theory of estrogen receptors reacting in various tissue with the resulting perceptions of fatigue (which I have heard before and I don't think it adequately explains everything).
     
  10. NexusOwl

    NexusOwl Spanish advocate

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    At the beginning they arguee about how he's an expert about CFS and Fibromyalgia but they will talk about CFS because it is less known. So he is supossed to be talking about CFS all the time.
     
  11. Shakota

    Shakota

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    I listened to him again, and now I get it. Hombre, this guy is not up-to-date. Isn't there a researcher who is current with the international CFS/ME scene?
     
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  12. NexusOwl

    NexusOwl Spanish advocate

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    I think some people from ASSSEM are very up-to-date, but they don't have the funds this kind of "expert" get. I don't have the impression of he being not aware of international scene... I feel like he is conviniently not wanting to go in there, as I have experienced many other MPs and researchers do in this country.

    They know other doctors don't know about CFSME more than they know from them (because they are the spanish authorities) and so they don't feel like they have to prove anything, they are the truth about CFS/ME here.

    I'll try to post some other examples of what the most prominent vission or model of CFS/ME is in Spain.
     
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  13. Shakota

    Shakota

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    ASSSEM has an interesting website. I'll read more of it later. Thanks for it!
     
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  14. NexusOwl

    NexusOwl Spanish advocate

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    I'm in a pretty bad state and that's why I'm not posting more, but I just got sent this website and I'm seriosly concerned about the display of the CSS model power in my country.

    http://www.sessec.org/quienes-somos/carta-del-presidente/

    As you can see (use google translate) they even use "Chronic Fatigue" instead of CFS... This is gonna hurt the patient community even more, as most doctors will know the disease from those self-proclaimed experts that sistematically ignore a variety of abnormalities in the condition in order to keep the egemony of their theories in Spain.
     
  15. charles shepherd

    charles shepherd Senior Member

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    The MEA is about to start funding a new biomedical research study that will involve people with severe ME/CFS

    The research will be carried out by Professor Elisa Oltra and colleagues at Valencia In Spain >>

    MEA Ramsay Research Fund to fund new research into biomarkers and markers of disease activity in people with severe ME/CFS | 20 December 2016

    We are pleased to announce that – following the normal rigorous peer review procedures – the MEA Ramsay Research Fund has agreed to fund a study that will be examining what are termed microRNA profiles in peripheral blood mononuclear cells (PBMCs) and exosome-enriched vesicles.

    The study will involve the use of ME Biobank blood samples that have been obtained from people with severe ME/CFS and from our Biobank group of healthy controls.

    The research will be carried out by Professor Elisa Oltra and colleagues in Spain and we are hoping that there will also be additional UK collaboration to the involvement of the ME Biobank in supplying the samples.

    The study will start early in the New Year and will take 12 months to complete.

    Total RRF funding = approx £50,000

    More info on MEA website:

    http://www.meassociation.org.uk/201...in-people-with-severe-mecfs-20-december-2016/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  16. NexusOwl

    NexusOwl Spanish advocate

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    Thanks for the info and the funding, doctor!

    These are great news, but I'm a little bit concerned about finding severe patients in Spain, becasuse some leading doctors in the "CSS" have been spreading the believe of CFS/ME not really having a severe spectre (not the one we use when we talk about severe) and they have been able to do so by ignoring the real severe patients saying they had to go to the hospital in order to be attended and if they didn't it was just because they were not willing to get better.

    They also say when severe spectre appears it is always transitory and sometimes they seem to be referring to a crash instead of a severe state.

    I know of some negligences and extreme cases around this policy.


    Btw, I'm not severe, but I can help you contact people that would fit into that term in case you or Professor Oltra need it. I'm also interested in knowing what kind of scale for severity this research will be using.
     
  17. charles shepherd

    charles shepherd Senior Member

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    Regarding blood samples from people with severe ME/CFS:

    We don't require any volunteers in Spain for this part of the research study

    We already have these blood samples + all the relevant clinical data from people with severe ME/CFS (as defined by Fukuda and Canadian diagnostic criteria) in the ME Biobank at the Royal Free Hospital in London

    This is one of the big advantages of having an ME Biobank - researchers (anywhere in the world) who require blood samples from people with well defined ME/CFS (including those with severe ME/CFS) can now obtain these samples from the UK ME Biobank

    UK ME/CFS Biobank website: http://cureme.lshtm.ac.uk
     
  18. NexusOwl

    NexusOwl Spanish advocate

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  19. slysaint

    slysaint Senior Member

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    Encefalomielitis Miálgica
    this is what I was after before................so it's E.M. (as it is in French speaking countries).

    good job btw;)

    fyi @JaimeS
     
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