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Doctors and politicians about the ME/CFS scandal

Discussion in 'General ME/CFS News' started by Helen, May 26, 2014.

  1. Helen

    Helen Senior Member

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    I was very happy this morning to read an article in the biggest Swedish morning paper about ME. It was written by representatives from the five biggest political parties. Three of the authors are also doctors.

    I hope a google translation will make it worth reading. At least I can tell that it is a strong support for ME. The politicians have formed a net-work for the sake of ME. They are working for creating a national competence centre to support diagnosing, treatment and research of ME. Surely this will lead to money for research.

    http://www.dn.se/debatt/en-pagaende-medicinsk-skandal-av-stora-matt/

    This important meeting and the visit of Dr. Dan Peterson lead to the creation of the network.


    Also a big thank to the Swedish association for PWME´s for their hard and serious work.
     
    Last edited: May 27, 2014
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  2. Sasha

    Sasha Fine, thank you

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    Impressive! :thumbsup:
     
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  3. Bob

    Bob

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    Thanks Helen. It's a good message. Very slowly, the message about ME is spreading across Europe.
     
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  4. NK17

    NK17 Senior Member

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    Yes from the north all the way to the south.
    What we need is for this kind of initiative to go viral and spread like an infection (pun intended).
    We need cohesiveness amongst the different group of doctors and advocates in the EU to keep pushing our agenda.
     
  5. Firestormm

    Firestormm Guest

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    How does one translate the article into English, please? Thanks :)
     
  6. Bob

    Bob

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    If you use Chrome browser, you get the option to do this automatically.

    Otherwise, post the web address into Google translate (and then it's necessary to enter a new line, after the web address, so the software recognises it.)

    But I've done it for you at this link:
    https://translate.google.com/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http://www.dn.se/debatt/en-pagaende-medicinsk-skandal-av-stora-matt/&edit-text=
     
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  7. Firestormm

    Firestormm Guest

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    "This page was not retrieved from its original location over a secure connection"

    Doesn't seem to want me to read it in English for some reason I cannot understand. Also can't see your version either for the same reason.

    Am running Firefox :(
     
  8. Sasha

    Sasha Fine, thank you

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    @Firestormm
    "An ongoing medical scandal of major proportions"
    Published today 0:49

    ME needs attention, says the five authors of the article. The disease is characterized among other things by a chronic fatigue, which can not rest away.
    Photo: Chris Pancewicz / Alamy ME needs attention, says the five authors of the article. The disease is characterized among other things by a chronic fatigue, which can not rest away.

    Affliction that belittled. At least 40,000 Swedish suffer the often incurable disease ME, which is characterized by chronic pain and fatigue. This means that more has ME than breast cancer or ms. Yet, awareness and knowledge embarrassingly low. It must be modified, writes representatives of five parliamentary parties.

    It is often said that the medical knowledge content traded for each new decade. This means that new knowledge comes to about known diseases, but also to new diseases and disease groups sometimes can be defined. Unlike the previous knowledge, it is the latter often subject to more suspicion from both the profession and the public, a suspicion which, unfortunately, often bordering on prejudice or pure contempt for the messenger's commitment to wanting to inform and seek help for those affected.

    Today, diagnosis of fibromyalgia accepted worldwide. So it was not before 1990, when the 2-4 percent of the population, of which 90 percent are women, who suffered from this chronic pain conditions often mentioned in the patient's medical records SVBK; "Pain, ache and burn the witches." This contemptuous attitude toward suffering fellow men then came to be amended so that, hopefully, the ones shown in this unsympathetic attitude realized that it was they and not the patients who had no current medical knowledge.

    A fibromyalgia related chronic neurological disorder, which today unfortunately is prone to the same contempt in Sweden that fibromyalgia was more than 30 years ago, the disease myalgic encephalomyelitis (ME). ME is characterized by chronic fatigue syndrome that does not go to rest away. It can be traced back to England in the fifties for then to describe an outbreak of an exhausting illness that hit previously healthy people as an aftermath to viral and bacterial infections. WHO classified the disease in 1969 as a more extensive disorder of the central nervous system.

    After a major outbreak in the U.S. in the 1980s is ME today considered to be a widespread disease with an estimated prevalence of at least 0.4 percent of the studied populations. Although these are still lacking in Sweden, the same presence here mean that, conservatively, 40,000 Swedes may suffer from the disease today. ME is in this case more common than for example, multiple sclerosis (MS) and breast cancer (source: Gotahälsan).

    Despite this, both the awareness that knowledge about ME embarrassingly rudimentary compared to most other diseases in both health care and the general public in Sweden in 2014. By that diagnosis is greatly neglected in our country compared with many other countries following natural to treatment, investigation and treatment of ME has largely been absent from almost all of our health care principals care. This must be modified!

    ME disease affects both adults and children, men and women, but more often women. You see two peaks in the age of onset, one between about 15 and 20 years of age and one between about 35 and 45 years of age. It is therefore not unusual for relatively young people affected and that several families diagnosed by the process of any infectious disease. It occurs in epidemics that even groups of people are affected, either in a particular geographic region or among people who hang out socially. But the dark figure is still high when most affected, perhaps as many as 80-90 percent of the sick, do not get a correct ME diagnosis within a reasonable time. In turn, it follows that the necessary measures can be taken to support both sick as relatives often absent.

    ME has a mixed symptom picture with disorders of both mental and physical functions. Besides the characteristic, almost paralyzing, fatigue, not to be confused with the now so common diagnosed mental fatigue syndrome usually occurs pains in muscles, joints, and sometimes a specific type of headache, occasionally even of migraine-. Different types of sleep disorders are common, and typically is that you do not feel refreshed after even a long period of sleep. Physiologically considered disorders of the immune, nervous and endocrine systems, as well as symptoms of cardiac, vascular, gastrointestinal system may occur.

    ME is also characterized by often substantial variations with generally poorer health status for a shorter as well as longer time intervals. Such relapses of ME is unpredictable but can be triggered by stress loading of either body or mind. ME is unfortunately for most sufferers a life-long disease. The prognosis for full recovery is poor and only a few to more than 10 percent is estimated today to be able to regain the same level of health as they had before the onset of illness.

    Internationally, much research into ME. Subsequent years' results of this suggests that some type of serious neuro-immunological activation, possibly due to an autoimmune process may be background reason for ME debuts clinically. The onset of ME affects your ability to work, the individual's social relationships, taking care of oneself and also the normal self-image could be damaged, which can lead to a crisis.

    Unfortunately still missing curative or general treatment that can relieve most of the ME symptoms simultaneously. The treatment on offer may focus on individual symptoms and providing support for self-help with the goal of improving quality of life will be achieved. Despite the fact that not everyone will be improved a lot, there is still a hope today for many to some relief and improvement should be achieved, provided that current knowledge about ME better reach out in Sweden than is currently the case.

    We parliamentarians therefore, across party and block boundaries, formed a network to support the ME-patients. The network aims at using the Patient Association for ME better than before reaching out with information to healthcare and the public about the condition. The network has also pledged to create a national center of excellence in support of diagnosis, treatment, and research into ME.

    We want from our national political platform with joint forces affect government and relevant authorities to act urgently to create such an important support to a neglected group of people who are suffering from too badly drawn attention of public health scourges that are around around us right here and now.

    What could be more appropriate than to peddle this political ambition of the Swedish people during the month of May when international ME-day falls, so that the problem can be lifted to greater awareness in all countries? Not to take such an opportunity would be in our opinion that politicians ignore an ongoing medical scandal of great proportions.

    Finn Bengtsson (M) Sven Britton (S) Barbro Westerholm (FP) Agneta Luttropp (MP) Eva Olofsson (V)
     
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  9. Bob

    Bob

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    I just tried it and it doesn't work in Firefox for me either. Sasha's given you a translation now, so you're OK. :)
     
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  10. rosie26

    rosie26 Senior Member

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    Wow, huge. Very pleased.
     
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  11. NK17

    NK17 Senior Member

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    Thank you Helen for starting the thread and uploading the article and Dr. Peterson's video.

    And thank you Sasha for providing the translation.

    For a PwME it makes very much sense, in spite of the syntactical problems and against all cognitive issues, the goal of the article and of the Swedish MPs is clear.

    I'd like to add that it's a bit sad to see that a clinician such as Dan Peterson that has been working tirelessly for the past 30 years, with and for PwME, here in the US, has to go to Sweden to be listened to and taken seriously ...

    It's a classical case of 'nemo profeta in patria' or nobody is a prophet in his own homeland.

    In any case if we have to start from somewhere, Sweden and the northern countries in Europe are a good place, those countries have strong social medicine systems, which in my opinion might help with funding of serious biomedical research and subsequent treatments.

    The fight is just beginning ;)
     
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  12. taniaaust1

    taniaaust1 Senior Member

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    I personally do think we have nearly no chance of making headway with this illness in UK or America (could it be those govenments themselves are making sure ME stays under wraps??), the IOM wont help at all as the gov isnt serious at wanting ME properly accepted (Ive always thought IOM could even make things worst). IOM is probably just a con to make it appear they are taking interest to ME/CFS patients etc.

    I believe progress forward will probably come from elsewhere and it will get to the point in which America and UK will be forced to have to change there too.
     
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  13. NK17

    NK17 Senior Member

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    I'm afraid I have to agree with you @taniaaust1. The IOM contract it's scary and that's why we need to keep our 'pressure' on them.

    IMO amongst our experts on the IOM panel one stands out above all the others: Dr. Ron Davis. He is our real and true Champion. I say this because right now he is doing some seminal genetic's studies using patients' bio samples from the clinics of Dr. Montoya @ Stanford and Dr. Kogelnik of the Open Medicine Clinic. He is also personally touched by ME/CFS, his son Whitney is severely affected. I think that his exquisite inquisitive mind, coupled with his scientific achievements and the fact that he lives with a loved one in desperate need of help will make him stick out his head and speak strongly against any biased view (pseudo scientific, psychosomatic garbage).
    With him we are finally talking about top of the line research and preliminary results have been announced on the Facebook Chronic Fatigue Research Center at Stanford.

    What stands out is certainly the absence of Dr. Peterson from the IOM panel and that says a lot about the US …
     
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  14. alex3619

    alex3619 Senior Member

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    I would not call the IOM an example of a con, or even spin, around ME. It is however, I think, the case that ME is an easy target for further bureaucratization of medicine. Rather than fix a broken medical insurance and cost system, they play at the edges picking targets that can be rationalized. The IOM process is one which has to be considered unproven in the current context, and subject to flaws and pitfalls that in many cases are foreseeable, they just fail to see them. Their intentions might even be benign, but its moot if what they are doing causes problems. Its results that matter, not intentions.

    This does not mean the IOM panel will fail us, it means there is a high risk of them failing us. The process itself is the major hurdle, as evidence based medicine in the current context is not a viable approach, at least not when used in a bureaucratic manner.

    The best outcome we can hope from the IOM is there will be a non-decision, as there was in GWI. To paraphrase Nancy Klimas (I hope I have that right), calling this panel was premature and in advance of the evidence. Further there is a systematic distortion in the research which follows from distortion of the funding base: good biomedical research is even now being either not funded or underfunded. What has mostly got well funded is problematic (I am being kind here) psychosomatic research.

    Even worse much of the "evidence-base" around CBT/GET is based on problematic diagnosis, and highly problematic outcome measures that seem to be discredited by the objective evidence, and have small effect sizes at best, yet is often treated as comparable highly reliable objective blinded randomized RCTs. None f these studies is blinded. Very little of the diagnostic criteria used is reliable. The subjective outcome measures are at risk of extreme bias, and are contradicted by the available objective measures. The statistical analyses used make invalid assumptions that discredit their claims (I am thinking here of the PACE trial). There is improper assessment of harm, as its based on general notions of harm and not specific to ME. In short, while it looks nice on technical form, this research fails on rational and objective evidence grounds.

    We have biomarkers, right now. The debate is on how useful they are, on subgroups, and on how to best use them. When this video was released, we were still awaiting independent confirmation of the 2 day CPET as a test. We have that now. We also have a huge volume of anecdotal evidence that its valid. There is currently no substantive reason to think its not, if not completely diagnostic, at least diagnostic of severe pathophysiology.

    Personally I suspect the 2 day CPET will be our first widely used biomarker, but that it will rapidly be superseded. For most of the history of the research we had no clue on where to look. Now we have increasing focus on areas that keep paying off.
     
    Last edited: May 27, 2014
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  15. WillowJ

    WillowJ Senior Member

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    there is a lot of talk about IOM, but much less about P2P, which has an even much worse process, and the bulk of the work and decisions during P2P will be made without the benefit of even some experts.
     
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  16. WillowJ

    WillowJ Senior Member

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    back to topic, that is very encouraging that some governments are starting to take serious notice. Thank you for posting. :)
     
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  17. Helen

    Helen Senior Member

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    Hi all,

    I am very happy to tell that I have just listened to the radio and 10 minutes talking about "the serious and unknown disease ME" in the news. It was a very good interview with a sick young woman and with Prof. Jonas Blomberg. http://www.investinme.eu/agenda.html#Jonas

    I would count this day as the day of breaktrough for ME in Sweden :balloons:.
    The 10 minutes of talk about ME will spread among people as this is a radio chanel that many people listen to.

    Hopefully this will help you in other countries too.

    Best wishes to all of you
     
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  18. Purple

    Purple Bundle of purpliness

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    Hi @Helen

    Could you please help translate the following bit, as Google Translate is probably translating it in an odd way:
    Swedish: ”sveda, värk och brännkärringar”.
    Google translates it as: "Pain, ache and burn the witches."

    It is in this sentence:
    Så var det inte före 1990, då de 2-4 procent av befolkningen, varav 90 procent kvinnor, som led av detta kroniska smärttillstånd inte sällan omnämndes i patientjournalen som SVBK; ”sveda, värk och brännkärringar”.
     
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  19. Tuha

    Tuha Senior Member

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    I am wondering if we should try to do our advocacy on EU level. There are more and more countries where is better atmosphere about ME. I think I checked 1 year ago and the EU Health Commissioner is a women from Malta.
    If I remember correctly I think Malta recognised ME and find ME like a big problem. So maybe we could take advantage from this
     
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  20. Helen

    Helen Senior Member

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    @Purple
    :) I realize that this expression must be odd. We don´t believe in witches any longer in the North ;).

    Seriously this is a very nasty expression earlier used by some (male) doctors in female, patient journals. It told that the patient (older women) complained of something like pain, ache and burning sensations that the doctor believed didn´t excist. In the journals they just wrote the initials SVBK not to be discovered by any patient reading her journal.

    I once read something like this: it is a common copying strategy among unknowledgeable doctors to claim that the patient has a psychosomatic diagnose. A copying strategy...
     
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