The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Sweden: ME/CFS on TV Program "Fråga Doktorn"

Discussion in 'General ME/CFS Discussion' started by mango, May 2, 2016.

  1. mango

    mango Senior Member

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    There was a segment on ME/CFS on the Swedish TV program Fråga Doktorn ("Ask the Doctor") last week. It has about 1 million regular viewers. :)

    The segment starts approx 9:45 minutes in:
    http://www.svtplay.se/video/8027476/fraga-doktorn/fraga-doktorn-avsnitt-16-2

    I guess you could call it a "human interest story", so there wasn't much about science, politics etc, but I think it really gave a fair picture of what life with ME can look like. Their aim was to raise awareness, to let people know that ME exists and that it is a serious illness. The chat in the studio afterwards could have been better, but all in all I think it was great. No psychobabble at all.

    The woman living with ME who was interviewed is a friend of mine so I'm obviously biased, but I found it hugely moving. I think she's super courageous and did a fantastic job :thumbsup: :hug:

    The strongest part, to me, was when they showed a video clip of her filmed on one of her really bad days. The contrast between how she came across during the interview and in the clip was just... absolutely devastating :cry: A picture is worth a thousand words, and all that...
     
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  2. Kalliope

    Kalliope Senior Member

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    It was a very nice segment. Well done of your friend to participate! It was heartbreaking when she spoke about missing out on a lot in her children's lives. She explained how it is to live with the disease so well.

    I am curious about the clinic Stora Sköndal outside Stockholm in Sweden which was mentioned in the segment. As far as I understand they have a started a clinic for ME-patients as part of their neurological ward quite recently? And this has gotten so popular that they have stopped accepting new remissions and are in process of hiring more staff.

    I would like to know a bit more about their approach to ME and on the experiences from patients who have been there.
     
    Last edited: May 3, 2016
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  3. Asa

    Asa Senior Member

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    @mango Thank you for sharing, and thank you of course too to your very brave friend and her husband too. I haven't watched this program series before but found on Wikipedia that Gunilla Hasselgren is the program's "TV-doktor" -- medical consultant? -- and she's worked as a general practitioner in a general, clinic setting.

    As best I understood, Per Julin (neurologist? / of Stora Sköndal) advocated for ME patients to stay within a general, clinic setting with a general practitioner. Afterwards though, Hasselgren commented that she disagreed with Julin on this point and that ME patients needed access to neurologists.

    I just wonder what influence/weight, if any, Hasselgren's opinion has. And I don't know now, but I'm pretty sure that a few years ago at least, the healthcare system had a shortage of neurologists. And so I'm wondering of course then if the motivation to keep ME patients at general clinics is in part to keep specialists costs down.

    I wonder if Julin is advocating for a general clinic setting as a realist and just trying to get a neglected population some help and hoping to educate general physicians some too? Or is this his longterm vision, period? (If that makes sense.) Is it ethical though to advocate for anything less than what is truly needed? There may not be designated funding for what's truly needed, but it feels very wrong to me to not acknowledge this as a truth---especially for a government to do this. But maybe this isn't Julin's "truth". Again, if that makes sense.

    I wonder too if patients with other neurological illnesses are getting bumped back to general clinics now.
     
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  4. Asa

    Asa Senior Member

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    Regarding post #3 question of shortage of neurologists throughout Sweden: a general google search (terms: sverige, brist, neurolog) yielded a first page result of articles/blogs, dating back to 2012, on this shortage. A search with the earlier mentioned terms plus the term "2016" yielded more recent articles as well.

    As I'm not able to more fully reserach this, just for general info I'll at least share that a 2015 article stated that Sweden has only half of the neurologists needed by its population---which I'm guessing did not include an estimated 40,000 people-with-ME.

    http://web.archive.org/web/20160505...eter/lokalt/varmland/stor-brist-pa-neurologer

    https://translate.google.se/transla...d/stor-brist-pa-neurologer&edit-text=&act=url
     
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  5. mango

    mango Senior Member

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    Sorry about the late reply. I was trying to get some of the people who are patients at Stora Sköndal to come here and answer your questions... maybe some of them will show up here later? :)

    Here is their website: http://www.storaskondal.se/varverksamhet/neurologiskrehabilitering/mecfsmottagning

    I haven't been there myself, so I have no first-hand experience myself. What little I know comes from following RME's updates, having talked to a few of their patients about their experiences and reading the discussions in a couple of the Swedish groups.

    They do indeed have biomedical approach. And yes, it is located at the neurological rehabilitation center.

    They opened in August 2015, and because of the long-standing countrywide lack of ME/CFS specialists, they have been completely swamped from the very first day. They are sorely understaffed but recruiting is a huge challenge, there simply aren’t enough competent doctors. The centre has an extremely long waiting list, and is therefore currently not accepting new referrals (since December 16, 2015).

    This new center is different than the previous projects in the Stockholm region from a few years ago, at the Danderyd and Karolinska hospitals. Those earlier projects aimed at developing rehabilitation methods, not investigating or treating patients, and they focused mainly on CBT... and have been more and more debated as time goes by.

    This new center accepts ME/CFS patients of all ages from all over the country (also through "egenremiss", whatever that is called in English? When the patient him/herself writes the referral?), and their mission is to offer medical care and research. They use the CCC for diagnosis. They also do deeper medical investigations and assessments of patients, additional tests, make diagnoses, write medical/doctor's certificates (is that the right word? läkarintyg in Swedish), prescribe medications and offer counseling and rehabilitation measures (physiotherapist, occupational therapist etc) according to the patients' individual needs. They (including the doctors) make home visits to the severely ill as well.

    I don't know what kind of biomedical research they are doing or are planning to do. I've been told that they have several interesting ideas. I would love to know more! :)

    There are currently two doctors there, one is a specialist in rehabilitation medicine and the other a specialist in neurology. They both work part time at the ME/CFS center, sharing a full-time position. Both have long clinical experience and both are published researchers.

    There's also a nurse and a rehabilitation team consisting of an occupational therapist, a physiotherapist, a counselor and a neuropsychologist. According to their website, the team has previous experience of neurological rehabilitation work for brain/mental fatigue and cognitive issues (personal opinion: I suspect they might be quite new to ME/CFS... learning by doing).

    Them being swamped and understaffed is obviously a huge issue for everyone involved... I saw someone (a pwme) mention that they had been told that it would take up to 2 years between sending in their referral and actually getting the first appointment... understandably, people are impatient and upset...

    But at the same time, it appears to be a wise thing to do, not to accept more patients at this time. They are already struggling to take care of the patients they already have, and needless to say those patients wouldn't want to be discharged early and sent back to the primary care provider...

    This problem will likely only become bigger in the future, seeing that the (other main biomedical center) Gottfries Clinic's contract won't be renewed :( I can't imagine that those patients will be be happy with the new (bio)psychosocial services that will replace Gottfries... they will still be in need of biomedical specialist care.

    Regarding treatment options, I'm afraid I don't know enough to comment on that. So far my general impression is that most patients are very happy just being listened to and respected, having their experiences validated, and not having to deal with the usual ignorance, psychobabble, suspicion and accusations etc.

    What I've seen mentioned so far is the usual stuff, like medications for sleep and pain management, physical therapy, CBT (for coping! not the BPS version). B12 injections and/or low dose naltrexone (LDN). But I know they are open to discussing other options as well.

    If you have specific questions, I'll try to find answers for you :)
     
    Last edited: May 13, 2016
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  6. mango

    mango Senior Member

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    There's been some discussion among us pwme about some things that have been said by the Stora Sköndal people...

    I agree with you @Asa, in Fråga Doktorn it seemed as if dr Julin was suggesting that patients should be the responsibility of the primary care providers (vårdcentralerna). And in another interview (discussed here) dr Lindbom is quoted saying "Primary care must get a chance to learn to recognise the disease ['recognise' as in "know what it is when you see it" -mango] . It's not realistic that all [patients] should come to a specialist clinic".

    Yes, what you write makes total sense to me :) I'm not sure what influence Hasselgren's opinion has (very minor, would be my guess?), and you are correct about there being a huge lack of neurologists in Sweden.

    The question is, what are they really trying to say here, where is this coming from? Are they misquoted, or has the message gotten distorted in the editing process? Is this what they actually believe and want?

    Personally, I find it very hard to believe... but I can only speculate and guess. One possible explanation that I find quite probable is that they are actually talking about the situation as it is right now, suggesting that although they would love to be able to offer all pwme the biomedical specialist care they need, at this time it's impossible for them to keep up and meet the demands because there simply are too many patients and too few doctors.

    Perhaps what they meant to say is that the primary care providers need to step up and accept part of the responsibility for these patients, at least temporarily until their center has had the time (and received the necessary resources!) to expand in order to meet the demand? Or until more specialist clinics have opened in other parts of the country and can help share the workload? But yeah, I don't know. This is only me guessing.

    If (if!) that is what they actually meant to convey, I really wish it had come across clearer in these interviews... I wonder if they are aware of how what they actually said might be interpreted by bureaucrats, politicians, others in the healthcare system..?

    I've asked the RME workgroup (those who have been working closely with the Stora Sköndal people for a long time now) for a clarification, because I'd be very interested to know what their actual view is.
     
    Last edited: May 13, 2016
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  7. Kalliope

    Kalliope Senior Member

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    Thank you for the reply @mango ! Hope they are not so swamped at Stora Sköndal that they're not able to participate at the upcoming Invest in ME-conference in London.

    It will be interesting to follow their work, especially if they've started to do research.
     
    Last edited: May 13, 2016
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  8. mango

    mango Senior Member

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    :) They will both be there, but only for one day I believe.
     
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