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Guideline "Tiredness" by DEGAM

Discussion in 'Advocacy Projects and Campaigns' started by Inara, Dec 20, 2017.

  1. Inara

    Inara Senior Member (Voting Rights)

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    DEGAM is the "German Society for General Practice and Family Medicine". In the past, DEGAM has published a guideline about "tiredness".

    Patients and some doctors took up their voice and wrote to Degam about their contents about CFS. There was some anger due to an ME patient organisation's behavior who agreed to the guideline. There seems to be a connection between this organisation and BPS people.

    In December 2017 a new guideline is to be published. Patient organisations, again, argued that ME/"CFS" is not tiredness and not a psychological disorder.

    Here is a short version: http://www.awmf.org/uploads/tx_szleitlinien/053-002k_S3_Muedigkeit_2011-abgelaufen.pdf

    Again, there is a focus on psychological history, and it is advised not to concentrate too much on diagnostic tests for the danger the patient may be "fixed" on a somatic cause, not a psychological one.
     
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  2. Inara

    Inara Senior Member (Voting Rights)

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    Here is the complete version: http://www.awmf.org/uploads/tx_szleitlinien/053-002l_S3_Muedigkeit_2011-abgelaufen.pdf

    What is also said:
    • P. 32: "CFS can not be differentiated from other diseases or from a healthy 'normal state' by a defined pathological process..."
    • P. 33: diagnostics that are proposed by the Canadian Consensus Panel are pointless and may be mayhem wrt. iatrogenic potential of pathologizing
    • P. 33: "CFS" is a concept, or an agreement of communication
    • P. 33/34: NICE and ICC criteria are compared; ICC is critisized for saying that ME is a severe multi-system illness
    • P. 37: "CFS" is not very present in Germany, but patients believe to have CFS; often Depression or Neurasthenia are diagnosed instead
    • P. 37/38: a central problem is avoidance which leads to deconditioning which leads to a vicious circle of depression, avoidance and helplessness
    • P. 38: light aerobic training and behavioral therapy are proposed
    (More can be found here: http://www.awmf.org/leitlinien/detail/ll/053-002.html)

    In a patient leaflet it is explained how you can reduce strain and increase your exercise activity.

    The majority of the references are papers by Wessely, Sharpe & Co.; the PACE trial is cited, GET and BPT are proposed, whereas pacing was found to be not a good option (p. 38/39).

    I wonder if it is reasonable to contact Degam about this, again, and argue why their recommendation is highly questionable, although several patient organizations already did so. Any opinions? Any other ideas?
     
    Last edited: Dec 20, 2017
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    That doesn't sound good. Looks like this is another area where NICE has caused problems. Hopefully, if we can improve things with NICE, that will help here?

    Maybe drawing attention to the growing recognition of problems with research like PACE, and the reasons NICE gave for their recent decision to review their own guidelines, could be helpful?
     
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  4. strategist

    strategist Senior Member (Voting Rights)

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    Sounds worsen that British psychobabble. Germany is really backwards it seems.
     
  5. Inara

    Inara Senior Member (Voting Rights)

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    Well, I hope that if things change in the UK, Germany must follow. BUT I thought that with respect to the US, too, and nothing changed.

    But I think it could be worth a try to write a letter, in the best case a scientific one with analyses, citing all the papers around the PACE and how the US reacted. I read the US "banned" all papers who used Oxford criteria and the PACE paper. I could need some concrete references regarding this.

    What led to a review of NICE guidelines?

    There was German doctor who communicated willingness to make a statement against this guideline, as he did in the past before.

    But if writing to Degam would be pointless in any case, I would spare the energy. A patient organization has the opinion it would be more fruitful to contact AWMF.
     
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    The Oxford criteria studies were not 'banned', but a major report was very critical of the Oxford criteria. Stating: "continuing to use the Oxford definition may impair progress and cause harm." (I'm sure there's a long report saying this, but google brought up this summary paper saying the same thing, and I've got to go do some chores now: http://annals.org/aim/fullarticle/2...-advancing-research-myalgic-encephalomyelitis )

    Here's the NICE page on why they are reviewing their guidelines:

    https://www.nice.org.uk/guidance/cg...we-made-the-decision#how-we-made-the-decision

    I don't know if it would be worth writing something if this new report is already finalised, but I'd be happy to look over any draft if you wanted.
     
  7. Philipp

    Philipp Senior Member (Voting Rights)

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    It is extremely difficult to convince the people responsible for this stuff with coherent arguments because you are arguing with the German branch of the hardest-core-wessleyites you will ever encounter. The Ärztekammer Nordrhein was responsible for the last version of this document, and they are really the worst of the worst. I sincerely doubt that improving NICE will have any impact whatsoever because no one (apart from Prof. Scheibenbogen, but she does not have enough political clout) gives a damn and they can simply circlejerk something else (e.g. cite the dutch psychobabblers or each other and ignore evidence, as they have always done).

    If anyone has a good idea how to apply pressure 'from the outside', by all means go for it, but arguing with those people directly is a waste of time. They know exactly what they are doing. This has always been fully intentional. Pointing it out to them will not change what they write. We have had Ärztefunktionäre in high places that were members of the SS (https://en.wikipedia.org/wiki/Hans_Joachim_Sewering) and, in my opinion, the general line of thought towards patients from these parts of the medical system still seeps through the cracks in cases like ME/CFS. If there is no completely undeniable biomarker, they will probably not be swayed.

    Mentioning things like Unrest, the research Ron Davis is doing or anything else is routinely discounted because those are 'not German sources'. International sources are fine, obviously, if they are used to shill some form of sellable therapy. The Ärzteblatt has traditionally mostly commented from the stance of the BPS crowd and 'conveniently' forgot to report on e.g. the work by Naviaux et al, at least as long as I bothered to look. Our health care system is the best in the world. Our researchers are the best in the world. Our cars are the best in the world. Do not dare to point out flaws. We have to protect our poor vulnerable insurance companies from those malingering patients at all costs.

    I have never met them or talked to them, but I imagine that Drs Bieger and Scheibenbogen would offer their commentary (again) if they were asked, but I do not know what the proper channels to go through are. Dr Bieger kindly put up this https://neurolab.eu/wp-content/uploads/2012/03/DGEAM-Leitline-Müdigkeit-Kommentar-Bieger-Clos-15-3-12.pdf document 5 years ago.

    It is not necessarily completely hopeless, I just want to emphasize that the people who crank out those Leitlinien-documents are likely not the ones that can be persuaded.
     
    Last edited: Dec 20, 2017
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  8. Andy

    Andy Committee Member

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    I appreciate that culture differences may have an impact, but all researchers that I have emailed have been willing to respond and, as far as I can tell, none have taken offence to a "lowly" patient writing to them. Some have been more forthcoming than others but I think that is to be expected, the only advice I would offer is the common sense sort of being brief and polite in any request. So, if there is a publicly available email address for them, I would encourage anybody to give it a go, or if only an address is available, put what you would have said in an email in a letter to them.
     
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  9. Philipp

    Philipp Senior Member (Voting Rights)

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    Umm, I meant the proper channels regarding whom to send their responses to and how to best coordinate efforts so the DEGAM people can't just ignore it. As far as I know some of the main drivers behind the protest against the last document had a bit of a falling out amongst themselves and may not be motivated to go through all the same stuff again, but I do not really know and am not in contact with them or anything. Sorry for not being more precise!

    Bieger/Scheibenbogen have both been extremely helpful in the past and I would not be surprised if they just responded to the new document without even being asked, or are at least already in contact with the people behind our advocacy organizations.
     
  10. Andy

    Andy Committee Member

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    Oh, I see. Sorry for getting the wrong end of the stick. :)
     
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  11. Inara

    Inara Senior Member (Voting Rights)

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    You are right. It cannot be denied that a certain German past still has major bad influences, amongst others in psychiatry. Very popular: work "therapy".

    According the Ärztekammer Nordrhein I understand there was a certain success in the past, by arguing on a scientific basis. There was some pressure, although I don't know the details.

    Any ideas?
    I can't believe nothing can be done.

    Their trick is to call their leaflets "guidelines" which aren't mandatory. Therefore you can't even sew them. Although it's hard to believe there is no judicial possibility.

    Yuk :grumpy:

    I'd say corruption is a relatively big problem in Germany.

    Then who or what?
     
  12. Philipp

    Philipp Senior Member (Voting Rights)

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    The success with the Kammer from NRW was a bit of a non-victory if they can simply re-release what is essentially the same document. I don't know how that went last time and why they felt they had to retract it. In any case, I am not actually sure how much impact any of those guidelines have in practice because care did not get better even after 'our' temporary win last time. As far as I can tell the document did not do a whole lot while it was out either (Insurance can simply cite something else).

    Going a bit off on a tangent, I vaguely remember that in the US a case could be made that the money allocated to research was against some rules for how funds are to be distributed according to the impact of diseases. I do not know if there is anything that is the same for us, and then there is always the 'trick' where a court can not allow a case to go forward if they 'think it has little chance of success' - which has routinely be used to thwart attempts at (in my opinion) legitimate claims, e.g. the list here https://translate.google.co.uk/translate?sl=de&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.sovd.de/index.php?id=1199&edit-text=(original: https://www.sovd.de/index.php?id=1199). I do not know if this is an avenue to possibly explore, this whole law/lobbying/activism stuff isn't something I have any experience with.

    I have thought about this stuff for the last couple days and did not come up with any more concise or productive thoughts on the whole topic beyond that though, I am afraid. I hope that either whoever got active last time will be at it again or that the Lost Voices Stiftung & Deutsche Gesellschaft für ME/CFS will pick up the slack.
     
    Last edited: Dec 23, 2017
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  13. TiredSam

    TiredSam Moderator Staff Member

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    I used to feel glad I was not living in the UK. Now where do I go?

    I shall continue to remain in hiding from the German health authorities. They will continue to collect my compulsory monthly health insurance subscription and make sure I get nothing back.

    I've been feeling quite optimistic about the M.E. landscape recently, and now this just before christmas :(. Arseholes.
     
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  14. Andy

    Andy Committee Member

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    https://translate.google.co.uk/ is your friend. Put the URL in the left hand box, select the source language and the language to translate to, if need be, and then click on the Translate button.
     
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  15. Philipp

    Philipp Senior Member (Voting Rights)

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    I was being an idiot, my browser addons blocked the script and I didn't reload the page after unblocking so the translator remained broken. Sorry for that...
     
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  16. Andy

    Andy Committee Member

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    Translation link works for me. :thumbup:
     
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  17. Inara

    Inara Senior Member (Voting Rights)

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    You speak my heart :D
     
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  18. Inara

    Inara Senior Member (Voting Rights)

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    They used a trick: Instead of calling it a mandatory guideline (which doctors MUST follow) they call it an 'optional' guideline. Therefore, you cannot sue them.

    As I understood a private person wrote to the Ärztekammer Nordrhein and scientifically analysed their guideline. At the same time, a homepage reported this. Documents were published, e.g. that showed that the Ärztekammer aimed at making CFS a psychological illness. This produced pressure.

    Doctors read that stuff. Courts cite and use those guidelines (although they are not binding). There is also another guideline (S3 "Functional, non-specific and somatic symptoms", where ME, Fibro, IBS...are listed - CBT and GET are mentioned as 'treatments'). IF a doctor heard of CFS he learnt it's psychological and must be treated with psychotherapy and exercise; it is advised not to give sickness leave. If someone is longer sick than 4 weeks a stay at a psycho clinic is proposed.

    This is interesting. There is https://www.iqwig.de.
    Maybe this would be a better contact?

    The one person who became active last time won't get active this time, I fear.

    Thank you @Philipp!

    If I'm informed correctly the German Society for ME wanted to contact AWMF. I didn't understand why, and they didn't explain. (They seemed to be a bit secretive about this - why?)

    I wouldn't wait and rely on others. We all can be active, and I wonder in which respect.
     
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  19. Inara

    Inara Senior Member (Voting Rights)

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    As long as you want no money from the authorities, there'll be no problem. And if you have money for a private doctor, everything's fine.
     
  20. Inara

    Inara Senior Member (Voting Rights)

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    Maybe if this forum is used as "public pressure", maybe this would help additionally to writing to them?
     

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