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News from Scandinavia

Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.

  1. voner

    voner Established Member (Voting Rights)

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    Johnathan, how does a clinician determine when to try rituximab in inflammatory arthritis? Are there simple blood tests? I am actually wondering if it is a clear and simple process or not...
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It is basically a matter of finding evidence of abnormal antibodies that can reasonably be linked to the arthritis. For rheumatoid factor or anti-citrulline antibodies, which are highly specific for inflammatory arthritis the situation is very straightforward. If these are not present further routine tests like immunoglobulin levels may show that antibody production is disturbed and a judgment can be made as to whether this is likely to be relevant.

    For cases with no evidence of antibody changes the justification for treatment has to rely on a perception of urgent need and a weighing up of probabilities. usually other options are moe sensible.

    The arthritis needs to be severe enough to warrant major treatment but that is not particularly complicated. There does nee to be a lengthy discussion with the patient about benefits and risks and what you hope to achieve and expect to happen without treatment.
     
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  3. JES

    JES Senior Member (Voting Rights)

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    IV saline is most likely given specifically to help POTS symptoms and increasing blood volume, so wouldn't that be a very plausible treatment rationale, given that saline directly increases blood volume? For some reason, almost every ME/CFS child patient reported in the news here in Finland seems to have co-morbid diagnoses of POTS, EDS, PANS, etc.

    There is one a hyperbaric oxygen clinic in this country, which is most likely where patients would get oxygen treatments from. The clinic website indicates their treatment is mainly for certain wounds, poisoning and decompression sickness. They go on to list sudden hearing loss, tinnitus, fibromyalgia, ME/CFS, autism and Lyme disease as "empiric treatment" conditions (difficult to translate from original, but something like therapy based on experience).

    Anyway, I know kids in Finland are not being offered IV saline or oxygen from a bunch of doctors treating ME/CFS, because the few doctors who used to see ME/CFS patients have all lost their license. Since there is no ME/CFS specialized doctor left, patients and parents of patients move to these clinics or whatever place they can to get some kind of treatment. Desperation? Sure, but IMO taking down some oxygen clinic or place for IV saline infusion and next step is people seeking much more dangerous treatments from abroad.
     
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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    We have discussed this before but the answer I think is no because saline given IV will be passed out in the urine within 20 minutes just the same as saline drunk by mouth. There is absolutely no credible reason for giving saline IV as far as I can see as someone trained in clinical physiology.

    I suspect the reason is that private practitioners have been offering these diagnoses to patients. I am increasingly confident that there is no association between EDS and ME and that EDS is grossly over diagnosed. I do not know what PANS is.

    If I was responsible for regulating medical care I would remove licenses from anyone using IV saline or oxygen for children with ME. That would partly be because the treatment was not justified by evidence, But it would also be partly for the reason I mentioned - that this sort of bogus teatment based on bogus diagnosis is acting as a trigger for health professionals concluding that parents are exposing their children to treatments that they should not be having. If I heard of children having thee treatments I would find it very difficult not to think that I had a responsibility to intervene. If children are exposed to things like this for no good reason there has to be a worry that more dangerous things may be tried. GET may be just as dangerous but that is not the point I am making - use of GET does not give rise to claims of FII and removal of children into care.
     
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  5. Willow

    Willow Established Member

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    Perhaps not, but children not being able to attend school on a regular basis does trigger misinformed "officials" getting involved resulting with the threat of children being removed from the family home and care if they do not submit to GET. Parents refusing to subject their children to this harmful treatment DO receive the charge of FII, particularly the mother. How unjust is that!! And look who is responsible for this horrific situation -- the medical community. Makes my blood boil. Personally, I think the IV saline is much more reasonable and responsible.
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I see nothing reasonable or responsible about using a treatment with no evidence base and no credible scientific base that will drive a wedge between family and health care professionals. Two wrongs do not make a right. I absolutely agree that there are the problems with GET you mention but that does not make other practices any less unethical, surely?
     
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    The use of GET can result in the diagnosis of PRS (when condition worsens) and children being removed from families
     
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  8. Willow

    Willow Established Member

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    I am not advocating for IV saline. My point was that desperate situations can result in desperate measures. When a parent is facing the prospect of having their child taken away and subjected to harm (GET) they are powerless to prevent, they may search for anything that may help their child, including IV saline. Who can blame them when they are placed in such an untenable situation? Given the choice of IV saline or forced GET, to me, the trial of IV saline is more reasonable and responsible. Such is the state of healthcare for these desperate ME patients and their families.
     
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  9. JES

    JES Senior Member (Voting Rights)

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    I'm not even sure GET as such is offered to those kids, since Finland doesn't have any national guidelines regarding ME/CFS. I doubt the hospital or pediatric doctors overseeing these kids even understand as much as an average UK GET therapist, who at least should be familiar with the idea of beginning "exercising" slowly. From what I've heard, the staff in Finland are just some randomly composed teams of psychiatrists and maybe physios. They most likely think the mother of the patient was somehow causing the symptoms and that they can fix the problem over a weekend or two. If not, they will probably kick the patients out of the hospital.

    IMO the situation is far too complex to solve it by simply intervening with doctors who prescribe IV saline. Actually doctors over here are already very eager to press the "report button" on their colleagues if they find anybody treating with off-label medication or medication they don't agree with (the exception is psychiatry or geriatrics, where off-label medication seems to be the norm). The two doctors who used to treat ME/CFS patients over here lost their license already a couple of years ago. This now leaves people going to random doctors who probably have no idea what to do with them. These patients reported in the news have probably found some new "underground" doctor who may offer them saline, or whatever treatment, maybe in attempt to be helpful or just to get rid of the patient. Report that doctor and people will go on to the next one, or travel abroad to see KDM.

    Getting rid of more doctors would in my view be a bit similar as attempting to remove all prostitution and thinking it will silence the demand. Actually this is close to what has happened already. The few doctors who see ME/CFS patients now don't want their names to be mentioned on social media in fear of a) attracting thousands of new ME/CFS patients or b) risking the "report button" from a colleague. It's become akin to underground prostitution to treat ME/CFS patients over here, which is bizarre.
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am not blaming parents. I am blaming physicians who use untested and implausible treatments. As indicated there is absolutely nothing reasonable about giving children IV saline. It makes no more physiologic sense than homeopathy and it can be significantly dangerous if a mistake is made.

    I don't buy the argument that because GET is awful there has to be an alternative just as awful that causes parents and professionals to become antagonistic.

    I see no need to get rid of ME doctors if they are being sensible. There are perfectly sensible ME specialists in the UK like Luis Nacul. Why do ME specialists have to go in for unethical treatments? Why not just care for patients, in which case there is not going to be any risk of being reported.

    I don't think the advocacy effort is going to get anywhere unless people take a level playing field view. If the world is to be persuaded that GET is a bad idea based on bad science then the same standards need to be applied to things like IV saline.
     
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  11. Willow

    Willow Established Member

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    Bizarre, indeed. I am so sorry to hear of this appalling situation in Finland, @JES. I shake my head in dismay and am so saddened to think of all the helpless ME patients there. How did we ever get to such a shocking situation? And what will it take to turn this around? I wish we had answers and more people on our side willing to help.
     
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  12. Willow

    Willow Established Member

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    I get your point, @Jonathan Edwards, about the level playing field for ME treatments and do not disagree. What I do disagree with is the "use of GET does not give rise to claims of FII and removal of children into care." I believe it does, both directly or indirectly, and that is what makes me so angry with those who have caused such situations to have developed in the first place by the development of unfounded theories of ME which have no basis in reality. Those are the people I am blaming.
     
    Last edited: Oct 22, 2019
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree that the establishment approval of providing GET contributes to the FII problem. When I said GET did not give rise... I was intending to mean in the way that things like IV saline do. I tried to point out that this is a problem of two EQUALLY WRONG approaches colliding with the child as the victim.

    I have a strong suspicion, however, that just refusing to do GET because it causes so much worsening is not in itself enough to lead to FII claims and care orders. From what we are told from Finland it seems that in most cases the situation is aggravated by people being told by private physicians they have things like EDS when almost certainly they do not. I am trying my best to get the UK establishment, and as a knock on effect, the world to see that GET is a disaster. I write documents to regulatory bodies to do this all the time. However, I think the other side must also take responsibility, which is why I am now working together with colleagues to try to address that as well.

    The situation in Finland sounds terrible but if physicians have been behaving irresponsibly then they deserve to have their licenses removed. It is perfectly possible to care for people with ME in a sensible way without getting involved in phoney diagnoses and treatments.
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Fluge/Mella and their ME research team at Haukeland University Hospital have for several years in a row received an earmarked allocation in the government budget. Last year the post was removed and re-entered after lots of protest. The post is missing this year as well and the deputy head of the Norwegian ME Association, Eirik Randsborg, has written a great letter to the editor to a newspaper covering medical news.

    Dagens Medisin: Bevilgningen til ME-forskningen må gjeninnføres i statsbudsjettet
    google translation: The allocation to the ME-research must be reintroduced in the state budget

    Unfortunately, ME is associated with disagreement, uncertainty and unconfirmed myths. But the turmoil in the field does not mean that the disease will disappear by ignoring it.

    Our association consists of patients who want to participate in their lives and who dream of being better. Research on ME can make this possible. At the 2012 election, Høyre (the conservative party) promised to focus on our patient population. This created expectations and optimism.

    We ask that the Prime Minister and the Minister of Health show that they stand by their promises and reinstate the support for ME research at Haukeland.
     
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  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New blog post about Lightning Process from Nina E. Steinkopf.
    She draws parallels to Lightning Process and debates concerning other alternative treatments as well as conversion therapy.

    One episode she writes about that I haven't heard about before, was from when Lightning Process coach Live Landmark gave a talk in 2017 for an organisation helping people in the process of breaking with religious milieus. According to the report of this talk, it soon became apparent that Lightning Process had strong similarities with methods used in charismatic religious milieus. This therefore led to strong reactions among participants with such a background, and the speaker chose to stop her talk as a consequence of the scepticism among the participants.

    The report continues:
    "Despite an a bit unfortunate atmosphere there and then between the speaker and the audience, the following hour became very positive for the participants. We chose to talk about the different reactions we had, why some reacted, and how this may be a sign that, among other things, som had not fully processed their experiences, since several of the participants were surprised by their own reaction. In addition, we chose to look at various characteristics that distinguishes us as out-breakers, including that our experiences can make us very skeptical of attempts at manipulation …….

    Steinkopf also draws parallels between Lightning Process and a debate surrounding the princess' boyfriend, an American shaman with ridiculous patient blaming statements, for instance that people get cancer because they want to get it.

    She mentions again that the leader of the national competence center for CFS/ME thinks it's important that ME-patients are treated with Lightning Process.

    Nina E. Steinkopf: Alvorlig syke pasienter må tro mer, tro bedre!
    google translation: Seriously ill patients need to belive more, believe better!
     
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  16. Anna H

    Anna H Established Member (Voting Rights)

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    I'm so sorry to hear this! :(
    Considering the report on severe ME from the Norwegian ME Association earlier this year (thread here: https://www.s4me.info/threads/the-norwegian-me-associations-report-on-severe-me.10140/)
    , which illustrates the truly devastating effects of this illness and the complete lack of medical and societal care and support for those afflicted, on top of the internationally renowned ME research that have come from Norway, this news become even more disheartening.

    https://www.dagensmedisin.no/artikl...orskningen-ma-gjeninnfores-i-statsbudsjettet/

    Didn't they read the report? Or did they, and still decided that this horrible disease not only needs less research funding, it needs none at all?:thumbsdown::eek:

    Great letter by Randsborg, I really hope your protests will get the post re-entered this year again!

    Edit :spelling, grammar
     
    Last edited: Oct 24, 2019
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  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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  18. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I really hope it gets reinstated.

    Now that this is brought up I've been meaning to ask the following: Are there any official documents about the earmarked allocation to ME research in the past or the mechanisms that allowed this? In Belgium, I keep getting the response that's not how research allocation works, that it's researchers, not politics that decide which grants are funded etc. The same response was basically given at the European level after Evelien van Den Brinks efforts. So I thought it might be useful to get an overview of how research funding has been earmarked to ME research in other countries (Australia, US, Canada etc.). Does anyone know more about the allocation in Norway?

    Many thanks in advance.
     
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  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    It started as a way to keep the trial RituxME funded and it was an annual allocation as long as the trial went on. When the trial ended, the post got removed but was re-instated last year due to pressure from patients. I don't know if it will be reinstated a second time as earmarked allocations for Fluge/Mella. Perhaps it would be easier to grant a general request from patients about earmarked allocations for biomedical ME research.

    ETA: Adding a link to an article about the Research Council of Norway's allocation for ME research on 30 million NOK. It was their own initiative and users were invited to have a say on what kind of research projects this allocation should further be distributed to:
    https://www.s4me.info/threads/the-r...nt-gave-users-real-influence.2621/#post-48964
     
    Last edited: Oct 24, 2019
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  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New blog post from Nina E. Steinkopf.

    The National Competence Service for CFS/ME is known for their "biopsychosocial" approach to ME and is recommending treatment approaches as GET, CBT and Lightning Process. Nina E. Steinkopf initiated a petition against the Competence Service which received over 7 000 signatures.

    The 5 year evaluation of the Competence Service is long due, and Nina E. Steinkopf has been trying to get information on how the evaluation is going while urging the Minister of Health Bent Høie to take action.

    Hvor omfattende må skadene bli, Bent Høie?
    google translation: How extensive must the injuries be, Bent Høie?
     
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