New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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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. Effi

    Effi Senior Member

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    @Scarecrow No worries, I know you're not defending Nijs. I am just not convinced that his kind of 'biomedical research' is getting us any useful results, and it irritates me that he gets money from both BPS and biomedical sides. That can't be right. But it is what it is, I guess...
     
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  2. DanME

    DanME Senior Member

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    I occasionally work for a German ME advocacy group, so I am able to answer some of your questions. There are mainly two reasons for the weak scientific output in Germany.

    1) We have only one research group, which conducts serious biomedical research on ME/CFS. The group around Prof Scheibenbogen in Berlin, which also works together with Fluge&Mella in Norway. Why only one? Germany is still in the dark ages of ME awareness. The entire medical establishment is heavily influenced by the GET/CBT school and thinks ME is a psychosomatic disease or not a real disease at all. It's extremely hard to overcome this stigma and get other researchers interested or get public funding for new research.

    2) We have only two small advocacy organisations, which are mainly run by sick patients. So our capabilities are limited. Until now we haven't been very successful in bringing politicians or new scientists on board. But we try our best!

    Last year, my small advocacy organisation started to speak to some members of parliament and we organised a little conference together with the Charité in Berlin. The new European COST initiative is hopefully going to help us convincing officials how serious our situation is.

    I have no idea, what happens in France though.
     
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  3. Hip

    Hip Senior Member

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    Did you go through all the UK papers individually?

    It looks like psychobabble has definitely increased decade-by-decade in the UK.



    As far as I am aware, the abstract and title of all the papers on PubMed and Medline are translated into English, so there would be no need to search under different languages.



    From the 1950s to around the 1990s, the UK did a lot of groundbreaking biological work on ME (including naming and defining the disease), and the enterovirus angle in ME. You can see some of the UK enterovirus studies listed in this post. That line of enterovirus research has all but petered out in the UK now, and only Dr John Chia is holding the fort on enterovirus, which I find tragic.

    In place of this enterovirus research, we now have psychobabble.



    I think people here will have different opinions as to what is legitimate ME/CFS research, and what is not.

    From my perspective, legitimate research is not always biochemical: epidemiological research is legitimate, research on disease statistical comorbidities legitimate, is quality of life research is legitimate, research on things like doctors' attitudes to ME/CFS is legitimate, research on the ME/CFS cost to the economy is legitimate.

    And for me personally, I consider a portion of the psychological research legitimate. Research showing increased rates of depression or anxiety in ME/CFS is legitimate, for example.

    The research I consider clearly illegitimate is PACE and GET/CBT, because the PACE study is most likely a fraudulent manipulation of data.
     
    Last edited: Jan 31, 2016
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  4. Hip

    Hip Senior Member

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    Thanks @DanME, that is the sort of answer I was looking for.

    My general thoughts and motivation for starting this thread is that France and Germany are major scientific forces in the world, and so if we as a global ME/CFS community can do anything to help get French and German science more interested in (non-psychosomatic) research into ME/CFS, we will have harnessed the power of two very scientifically talented nations.

    I am just wondering how the rest of the ME/CFS community can help support the advocacy and educational efforts that ME/CFS patients in France and Germany are making.

    Obviously language is a potential barrier, and it unfortunately prevents most anglophone ME/CFS patients from helping with simple acts of advocacy, such as writing posts under online French and German newspaper articles.

    But there must be some ways that the large anglophone section of the ME/CFS community can extend a helping hand.

    Any ideas about this?
     
    Last edited: Jan 31, 2016
  5. Effi

    Effi Senior Member

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    I absolutely agree, there are different angles of research that can be legitimate and lead to useful results. But at the same time there has been a tremendous lack of biomedical research in our field, which is the kind that is most likely to bring us actual useful treatment, the kind that could bring some kind of illness remission. I think that's why many of us like to stress the biomedical/biochemical aspect.
     
  6. Hip

    Hip Senior Member

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    NOTE: I have just modified upwards the figures in the first post of this thread (the figures for the number of ME/CFS studies found in each country), as I realized I was not capturing enough studies from each country, due to there being more than one name for certain countries (eg: United States or USA). So now I have included these alternative country names in the PubMed search.
     
  7. Hip

    Hip Senior Member

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    Just out of interest, I have again modified the PubMed search parameters to try to select only the biomedical ME/CFS papers that each country produces.

    I did by adding to the existing PubMed searches a large set of keywords that are normally associated with biomedical ME/CFS studies. These biomedical keywords I added are:


    So then if we only search for ME/CFS papers on PubMed which have one or more of the above keywords in the paper title or abstract, this search gives us the number of biomedical ME/CFS studies per country:
    The percentage figure in the above table expresses the number of biomedical ME/CFS studies a country has performed as a percentage of that country's total number of ME/CFS studies.


    So the countries which conduct the highest number of biomedical ME/CFS studies as a percentage of their total ME/CFS study output are:


    Then at the bottom of the list, the countries which conduct the least number of biomedical ME/CFS studies as a percentage of their total ME/CFS study output are:
     
    Last edited: Feb 2, 2016
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  8. taniaaust1

    taniaaust1 Senior Member

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    Hip, from the Australian results, for some reason what you are trying to do appears to be way out. In Australia the main ME/CFS research groups are biomedical ones, I personally don't know any psychological ME/CFS research group in Australia .. though there Lloyd who is a Wessely schooler person and has done some studies (could he have done more studies then all the ME/CFS research group ones here? I find that hard to believe).

    eg The ones most known in Australia for ME/CFS research are ..
    in my state of SA there is the Adelaide CFS research group of researchers, they did CFS studies over years in conjunction of some of our main hospitals and members of that still doing ME/CFS studies.. , I'm awaiting for latest study to be published (I don't know of one psych study one coming from that group). There is also 1 or 2 young individual CFS researchers as part of the one of the uni's, they haven't done a psych study.

    In other states.. the Newcastle research group which has now moved ...and joined our National ME/CFS centre.. I cant ever remember them doing a psych study. What was known as Alison hunter Memorial foundation here now merged with the new national centre in some way .. only supported funding for biochemical studies all over Australlia (was it since the early 90s?? they were around a very long time).. and the queensland gov is the only gov I know who put funding into ME/CFS studies.. and those I know were all biological

    So Lloyd is the only one over here I know of doing pysch studies.. so those result percentage to me don't seem to be correct unless he flooded the ME/CFS research field for a time like Wessely did (Lloyd copublished at least one study with Wessely). Most of the studies here have been biological to my knowledge.

    To the other Aussies which follow CFS studies here.. does it seem correct in that we have more psych studies then biological ones???
     
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  9. Hip

    Hip Senior Member

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    @taniaaust1
    The way I have done this, Australia having 45% biomedical studies does not mean that the remaining 55% are psychological studies.

    By biomedical studies, I mean the hardcore science that looks in the blood, CSF or tissues of ME/CFS patients for infections, inflammatory cytokines, autoantibodies, etc; or performs brain scans like MRI, SPECT, etc; or performs genetic studies. That sort of thing.

    The remaining 55% is softer science research that I am not including under the biomedical heading. That softer science could include, for example, studies on the quality of life on ME/CFS patients. And of course any psychological research is not included under the biomedical heading either.


    If you want to see a list of the Australian studies that are included under my biomedical heading (the 45%), then just go to PubMed, and enter the following search query (click on the spoiler to get the text):

    (chronic fatigue syndrome[Title] OR myalgic encephalomyelitis[Title]) AND Australia
    AND ( inflammatory[Title/Abstract] OR inflammation[Title/Abstract] OR proinflammatory[Title/Abstract] OR microglia[Title/Abstract] OR mitochondria[Title/Abstract] OR mitochondrial[Title/Abstract] OR oxidative stress[Title/Abstract] OR free radicals[Title/Abstract] OR peroxidation[Title/Abstract] OR cytokine[Title/Abstract] OR chemokine[Title/Abstract] OR interleukin[Title/Abstract] OR IL[Title/Abstract] OR TNF[Title/Abstract] OR TGF[Title/Abstract] OR antibody[Title/Abstract] OR antibodies[Title/Abstract] OR autoantibodies[Title/Abstract] OR autoimmune[Title/Abstract] OR autoimmunity[Title/Abstract] OR titer[Title/Abstract] OR titre[Title/Abstract] OR IgG[Title/Abstract] OR IgM[Title/Abstract] OR IgA[Title/Abstract] OR IgE[Title/Abstract] OR PCR[Title/Abstract] OR ELISA[Title/Abstract] OR allergy[Title/Abstract] OR allergens[Title/Abstract] OR CNS[Title/Abstract] OR cerebrospinal[Title/Abstract] OR white matter[Title/Abstract] OR serum[Title/Abstract] OR plasma[Title/Abstract] OR gene[Title/Abstract] OR genetic[Title/Abstract] OR SNP[Title/Abstract] OR RNA[Title/Abstract] OR dsRNA[Title/Abstract] OR DNA[Title/Abstract] OR POTS[Title/Abstract] OR hypertension[Title/Abstract] OR hypotension[Title/Abstract] OR orthostatic[Title/Abstract] OR cardiovascular[Title/Abstract] OR cardiac[Title/Abstract] OR CPET[Title/Abstract] OR VO2[Title/Abstract] OR autonomic[Title/Abstract] OR blood pressure[Title/Abstract] OR endothelial[Title/Abstract] OR pH[Title/Abstract] OR dopamine[Title/Abstract] OR serotonin[Title/Abstract] OR norepinephrine[Title/Abstract] OR cortisol[Title/Abstract] OR receptor[Title/Abstract] OR cortex[Title/Abstract] OR brainstem[Title/Abstract] OR prefrontal[Title/Abstract] OR midbrain[Title/Abstract] OR motor cortex[Title/Abstract] OR corticospinal[Title/Abstract] OR MRI[Title/Abstract] OR magnetic resonance[Title/Abstract] OR EEG[Title/Abstract] OR electroencephalogram[Title/Abstract] OR SPECT[Title/Abstract] OR positron emission tomography[Title/Abstract] OR epidemiology[Title/Abstract] OR epidemiological[Title/Abstract] OR monozygotic twin[Title/Abstract] OR comorbidity[Title/Abstract] OR circadian[Title/Abstract] OR immunomodulator[Title/Abstract] OR immunological[Title/Abstract] OR immune[Title/Abstract] OR natural killer[Title/Abstract] OR immunoglobulin[Title/Abstract] OR hormone[Title/Abstract] OR endocrine[Title/Abstract] OR neuroendocrine[Title/Abstract] OR antiviral[Title/Abstract] OR antibiotic[Title/Abstract] OR valacyclovir[Title/Abstract] OR valganciclovir[Title/Abstract] OR cidofovir[Title/Abstract] OR rituximab[Title/Abstract] OR hydrocortisone[Title/Abstract] OR virus[Title/Abstract] OR viral[Title/Abstract] OR postviral[Title/Abstract] OR coxsackie[Title/Abstract] OR coxsackievirus[Title/Abstract] OR echovirus[Title/Abstract] OR enterovirus[Title/Abstract] OR enteroviral[Title/Abstract] OR Epstein-Barr[Title/Abstract] OR varicella[Title/Abstract] OR cytomegalovirus[Title/Abstract] OR HHV-6[Title/Abstract] OR HHV-7[Title/Abstract] OR parvovirus[Title/Abstract] OR XMRV[Title/Abstract] OR bacteria[Title/Abstract] OR Chlamydia[Title/Abstract] OR Giardia[Title/Abstract] OR Mycoplasma[Title/Abstract] OR Coxiella[Title/Abstract] OR organophosphate[Title/Abstract] OR organophosphates[Title/Abstract] OR pesticide[Title/Abstract] OR pesticides[Title/Abstract] OR mycotoxin[Title/Abstract] )

    And if you want to see the Australian studies excluded from the biomedical heading (the 55% of softer science), then enter the following search query:

    (chronic fatigue syndrome[Title] OR myalgic encephalomyelitis[Title]) AND Australia
    NOT inflammatory[Title/Abstract] NOT inflammation[Title/Abstract] NOT proinflammatory[Title/Abstract] NOT microglia[Title/Abstract] NOT mitochondria[Title/Abstract] NOT mitochondrial[Title/Abstract] NOT oxidative stress[Title/Abstract] NOT free radicals[Title/Abstract] NOT peroxidation[Title/Abstract] NOT cytokine[Title/Abstract] NOT chemokine[Title/Abstract] NOT interleukin[Title/Abstract] NOT IL[Title/Abstract] NOT TNF[Title/Abstract] NOT TGF[Title/Abstract] NOT antibody[Title/Abstract] NOT antibodies[Title/Abstract] NOT autoantibodies[Title/Abstract] NOT autoimmune[Title/Abstract] NOT autoimmunity[Title/Abstract] NOT titer[Title/Abstract] NOT titre[Title/Abstract] NOT IgG[Title/Abstract] NOT IgM[Title/Abstract] NOT IgA[Title/Abstract] NOT IgE[Title/Abstract] NOT PCR[Title/Abstract] NOT ELISA[Title/Abstract] NOT allergy[Title/Abstract] NOT allergens[Title/Abstract] NOT CNS[Title/Abstract] NOT cerebrospinal[Title/Abstract] NOT white matter[Title/Abstract] NOT serum[Title/Abstract] NOT plasma[Title/Abstract] NOT gene[Title/Abstract] NOT genetic[Title/Abstract] NOT SNP[Title/Abstract] NOT RNA[Title/Abstract] NOT dsRNA[Title/Abstract] NOT DNA[Title/Abstract] NOT POTS[Title/Abstract] NOT hypertension[Title/Abstract] NOT hypotension[Title/Abstract] NOT orthostatic[Title/Abstract] NOT cardiovascular[Title/Abstract] NOT cardiac[Title/Abstract] NOT CPET[Title/Abstract] NOT VO2[Title/Abstract] NOT autonomic[Title/Abstract] NOT blood pressure[Title/Abstract] NOT endothelial[Title/Abstract] NOT pH[Title/Abstract] NOT dopamine[Title/Abstract] NOT serotonin[Title/Abstract] NOT norepinephrine[Title/Abstract] NOT cortisol[Title/Abstract] NOT receptor[Title/Abstract] NOT cortex[Title/Abstract] NOT brainstem[Title/Abstract] NOT prefrontal[Title/Abstract] NOT midbrain[Title/Abstract] NOT motor cortex[Title/Abstract] NOT corticospinal[Title/Abstract] NOT MRI[Title/Abstract] NOT magnetic resonance[Title/Abstract] NOT EEG[Title/Abstract] NOT electroencephalogram[Title/Abstract] NOT SPECT[Title/Abstract] NOT positron emission tomography[Title/Abstract] NOT epidemiology[Title/Abstract] NOT epidemiological[Title/Abstract] NOT monozygotic twin[Title/Abstract] NOT comorbidity[Title/Abstract] NOT circadian[Title/Abstract] NOT immunomodulator[Title/Abstract] NOT immunological[Title/Abstract] NOT immune[Title/Abstract] NOT natural killer[Title/Abstract] NOT immunoglobulin[Title/Abstract] NOT hormone[Title/Abstract] NOT endocrine[Title/Abstract] NOT neuroendocrine[Title/Abstract] NOT antiviral[Title/Abstract] NOT antibiotic[Title/Abstract] NOT valacyclovir[Title/Abstract] NOT valganciclovir[Title/Abstract] NOT cidofovir[Title/Abstract] NOT rituximab[Title/Abstract] NOT hydrocortisone[Title/Abstract] NOT virus[Title/Abstract] NOT viral[Title/Abstract] NOT postviral[Title/Abstract] NOT coxsackie[Title/Abstract] NOT coxsackievirus[Title/Abstract] NOT echovirus[Title/Abstract] NOT enterovirus[Title/Abstract] NOT enteroviral[Title/Abstract] NOT Epstein-Barr[Title/Abstract] NOT varicella[Title/Abstract] NOT cytomegalovirus[Title/Abstract] NOT HHV-6[Title/Abstract] NOT HHV-7[Title/Abstract] NOT parvovirus[Title/Abstract] NOT XMRV[Title/Abstract] NOT bacteria[Title/Abstract] NOT Chlamydia[Title/Abstract] NOT Giardia[Title/Abstract] NOT Mycoplasma[Title/Abstract] NOT Coxiella[Title/Abstract] NOT organophosphate[Title/Abstract] NOT organophosphates[Title/Abstract] NOT pesticide[Title/Abstract] NOT pesticides[Title/Abstract] NOT mycotoxin[Title/Abstract]

    The second search query above is the same as the first, but works in the opposite way (the first query looks for ME/CFS studies that contain my biomedical keywords; the second query looks for looks for ME/CFS studies that do not contain any of the same set of biomedical keywords).

    These searches only provide a rough estimate of the number of biomedical and non-biomedical studies, and there may be some errors, because I have probably missed some important biomedical keywords.
     
    Last edited: Feb 1, 2016
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I believe the Alison Hunter foundation helps fund the ongoing research at Griffith university and the Queensland govt also contribute to this. I believe she has stipulated only towards biomedical research in cfsme and also donates to Alzheimer's research as this was what her father died from.

    Alison has an interesting story of suffering and poverty, later inheriting a large fortune from her father that she didn't know much about or met later in life, I can't quite recall. She has written that she now lives simply with her pets and has no need for extravagant life style etc so set up this foundation with her inheritance to help further cfsme research. Amazing generosity .
     
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  11. *GG*

    *GG* senior member

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    @heapsreal Is Australia a Socialist country? I know the USA has Socialism, hey look at Bernie Sanders on the Democrat side running for President.

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

    Actually, how does Canada figure into all this?

    GG
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Australia is a mixed bag when it comes to socialism and capitalism . We have a public health and education system which runs parallel to a private health and education system. Complicated to understand it unless you live here i guess?
     
  13. msf

    msf Senior Member

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    Well, KDM and Maes have probably redressed the balance somewhat.
     
  14. *GG*

    *GG* senior member

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    Very similar in the US I believe. We have Public/gov't education. And the Health Care industry is very much controlled by the gov't. They only pay so much on the dollar compared to Insurance Companies, that's why the premiums go up beyond inflation, year after year. The providers need to make up the difference some place, otherwise they would quit practicing, or go out of business.

    GG
     
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  15. jimells

    jimells Senior Member

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    Haha, those are some ugly-looking search strings. Big congratulations are due just for getting all the brackets in the right places :thumbsup:
     
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  16. Theodore

    Theodore Senior Member

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    I think one of the issues is the lack of information provided by "Association Française du Syndrome de Fatigue Chronique". The Facebook group is much more helpful than them.

    Unfortunately, English language isn't well understood by Frenchs, patients have no clues about what is going on regarding research and "treatments" since nothing comes from France.

    They need a french phoenix rising!
     
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  17. jadam914

    jadam914 Foggy member

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    Certainly right, even though there is some merritt to counseling after the systemic abuse, for decades, from more than one country and organization because of psychiatric pseudoscience, no psych research is acceptable to me.
     
  18. Hip

    Hip Senior Member

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    Perhaps if the ME/CFS Roadmap for Testing and Treatment I wrote were translated into French and German, at least there would be something on the web to help guide French and German ME/CFS patients to the various helpful ME/CFS treatments available.

    An approximate translation to French and German could be done with Google translation, and then the translation imperfections could be fixed by a native speaker.

    The ME/CFS roadmap Google translated into French looks like this.

    And into German like this.
     
  19. Theodore

    Theodore Senior Member

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    You're right, that could be a very good start.

    I can translate it and send it to you since you're the one in charge of this page, aren't you?
     
  20. Hip

    Hip Senior Member

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    Sounds good.

    What I could do is set up a French version of the roadmap on another page on my website, and include within that page the rough Google translation to French. Like the following page that I just quickly set up:

    https://sites.google.com/site/cfstestingandtreatmentroadmap/french

    Then I could give you editing access to that page (this works through you Google account login), and then you could edit and correct the French page directly. My roadmap website is hosted on Google Sites, and editing Google Sites webpages is quite easy: it works just like a normal word processor (once you have editing access, you just press a button at the top of the webpage, and you can then edit the page there and then).

    That way, you can do the work on your own timescale, as and when you have the energy and inclination. Due to brain fog, ME/CFS projects alway need a long timescale!

    It would be great if you could do this, because as a starting point for guidance, the roadmap might be quite helpful to those in France with ME/CFS.
     
    Last edited: Feb 15, 2016
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