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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Why so little ME/CFS research from France and Germany?

Discussion in 'Advocacy Projects' started by Hip, Jan 30, 2016.

  1. Hip

    Hip Senior Member

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    There seems to be little ME/CFS research done in France and Germany, relative to their overall scientific output. Why is this?

    Using a rough method, I found that the number of ME/CFS scientific research papers published by each country is the following:
    France and Germany, along with the UK, are the leading countries in Europe in terms of publishing scientific papers. Yet Germany and France seem to have published very few ME/CFS papers. In fact Norway, a country of just 5 million inhabitants, has produced more ME/CFS papers than France or Germany.

    I wonder why this is. Moreover, shouldn't ME/CFS patients in France and Germany be advocating for more ME/CFS research? These countries are leading forces in science and technology, so it would be good to have them onboard.

    The following diagram shows the number of scientific papers (of any sort) published by different countries around the world. As you can see, France and Germany are leading nations in terms of their overall scientific output. Yet they do very little ME/CFS research.


    Number Of Scientific Papers (Of Any Kind) Published By Country (in 2011)
    papers.jpg
    Source: here.​


    NOTE: I used an approximate method to determine the number of ME/CFS research papers on PubMed published in different countries: this method was to search for "chronic fatigue syndrome" or "myalgic encephalomyelitis" in the title of the paper, and to search for the particular country name in the paper.

    Hopefully this method produces figures that reasonably represent the amount of ME/CFS research output in each country.

    I also tried searching using the PubMed data field element [PL], which is the publication location (country of the publishing journal). The search syntax is like this. However, this did not produce accurate results, mainly because you often get researchers from different countries publishing their studies in US, UK, etc journals.
     
    Last edited: Feb 2, 2016
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  2. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Great analysis! Thanks!
    I wonder what the UK stats would look like if you only included biomedical studies?
     
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  3. Hip

    Hip Senior Member

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    Good question. I just modified the search parameters to exclude any UK papers containing the phrases "graded exercise" and "cognitive behavioural therapy", and with these GET/CBT papers excluded, it brings the UK total number of ME/CFS papers down from 595 to 480.

    Similarly for the Netherlands, another country with a lots of psychobabble ME/CFS research, modifying the search to exclude GET/CBT brings to the total number of Dutch ME/CFS papers down from 173 to 112.
     
    Last edited: Jan 31, 2016
  4. JES

    JES Senior Member

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    I saw a documentary about Lyme disease where patients in France were basically ignored. Considering that, it's not a huge surprise if the same is the case for CFS. A bit more surprised about Germany, as they have much better Lyme treatment available and a more open approach to treating chronic diseases from what I've read.
     
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  5. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Thanks Hip. It's positive that the majority of studies from the UK and Netherlands are not BPS (based on your search criteria results). Thanks also for providing the query, I might have a play with it later to narrow stats down to output by decade. It might be that the BPS studies have only come out of the UK in the past 15-20 years (as though that's not a certainty...).
     
  6. *GG*

    *GG* Senior Member

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    :bang-head:
    So no study with the words GET/CBT are published with a positive outcome for ME/CFIDS/CFS?

    Can you do a percentage drop? Or Increase if that is easier :)

    GG

    @Hip So this is just for 2011, right? Wonder how things change or stay the same say over 5, 10 or 20 years. I think lots of people have been suffering with this for a Generation now, I know I am going to be 13 years real soon, ouch:balloons::bang-head::angel::ill::redface: I always think I could be worse, hope I don't ever get worse:aghhh:
     
    Last edited: Jan 30, 2016
  7. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Hip, I got 11/183 biomed studies out of the UK before Jan 1, 1990.

    The first one returned was this little gem: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1836497/?page=1:
    38/183 in the 90s, 61/183 in the first decade after 2000 and 76 between 2010 to date.

    Lots of psych ones coming through though, so the query is not bulletproof...
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I didn't think the uk did any biological research on cfsme? Or is it mostly coping strategies etc. Hard to imagine much else when a uk dr can lose their license for prescribing b12 injections ? ?
     
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  9. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    To be fair you would also have to search under encephalomyelite myalgique, syndrome de fatigue chronique for France and the equivalent for Germany.
     
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  10. Effi

    Effi Senior Member

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    interesting analysis, thanks @Hip Just wanted to add this: not all BPS papers have GET or CBT in them. BPS goes a lot further than just talking about GET/CBT... I see Belgium on the third place on the list, but almost all Belgian papers I've read over the years have been BPS or worse even: BPS undercover.

    Maybe search words like 'PEM' or certain immune markers (or other biomarkers) could lead us to which of these papers are actually biomedical?
     
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  11. A.B.

    A.B. Senior Member

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    I second that @Effi

    I have given some thought to this topic since I had a little project where I programmatically counted the number of papers published on ME/CFS, with the ultimate goal of classifying these as either biologically and psychologically orientated. I quickly realized that looking at the title alone is insufficient (and that classification was more work than I was willing to do at the time).

    One strategy that could work is to randomly select, say 100 papers, manually classifying them, and then extrapolating from that.

    But that doesn't tell us anything about trends over time, which is what I was interested in. One would have to write a program that can look at the title, abstract, institutions and correctly classify a paper as psychologically or biologically oriented. Unless you were willing to manually work through 3400 papers or so.
     
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  12. sarah darwins

    sarah darwins I told you I was ill

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    SW himself would detest this exercise. I think his phrase was “the worst kind of Cartesian dualism”, or something like that. Keep it up!
     
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  13. Scarecrow

    Scarecrow Revolting Peasant

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    There are two ME charities in the UK dedicated solely to biomedical research: ME Research UK and Invest in ME.

    Here is an overview of the research funded by MERUK when they passed their £1M mark.
    http://www.meresearch.org.uk/wp-content/uploads/2014/06/ResearchOverview2014.pdf
     
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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Looks good.
    Is this whats been done, in the process of or a plan of what they want to do?

    Its the same problem worldwide , but would be nice if the government chipped in more .
     
  15. Effi

    Effi Senior Member

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    I have seen quite a few papers by Nijs that were funded by ME research UK, but Nijs is full blown BPS. In this document you posted it says that he looks at the 'brain and immunology aspect of ME'. That's not what I've been reading in his research... And that's what I mean when I say 'BPS undercover'...
     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    That was all research funded to the date of the overview, some of which was yet to be published at that time.
    I wish we had information on research applications refused by organisations such as the MRC, NIHR etc.

    The endothelial dysfunction research in Dundee (which was started by Vance Spence c.2000 and continued by David Newton) has been picked up by Fluge and Mella and forms one of their hypotheses about ME/CFS pathology. They also observed similar dysfunction in their patients and their current rituximab trial is incorporating an endothelial function substudy.
     
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  17. Scarecrow

    Scarecrow Revolting Peasant

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    Well, I'm certainly no fan of his irrational fear of stair climbing paper but any study funded by MERUK is strictly biomedical.


     
  18. lansbergen

    lansbergen Senior Member

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    I think it is not only endothelium but also epithelium. I guess the problems stem from the basements membranes.
     
  19. Effi

    Effi Senior Member

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    @Scarecrow I know it all looks ok on paper, and this not a question directed towards you personally, but just in general: If this is biomedical research, then why is he still forcing GET upon us? And spreading this hypothetical idea of central sensitisation as if it were a proven fact?
    This research group always uses obfuscating criteria and definitions for CFS, so it's never even sure which target group they're talking about. Since agressive GET crashed and burned, they started using a slightly more biomedical approach that is geared towards nothing else but some form of GET. It is nothing but a new construction to justify GET. The BPS crew are great marketeers, with a catchy sales pitch. And that's how they get all the money.
     
  20. Scarecrow

    Scarecrow Revolting Peasant

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    First of all, I'm not defending Jo Nijs.

    We have entered this discussion from different angles. I am trying to address the commonly held perception that nothing but BPS research comes out of the UK and I provided information about that. One of the researchers funded by MERUK is Nijs. Regardless of his other research and what he believes the aetiology of ME/CFS is, the studies funded by MERUK are biomedical.
     
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