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Invitation to Stockholm (Sweden) seminar on paediatric ME/CFS 12 Nov 2014

Discussion in 'General ME/CFS News' started by Sasha, Aug 30, 2014.

  1. Sasha

    Sasha Fine, thank you

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  2. Helen

    Helen Senior Member

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    @Sasha and other interested. I hadn´t seen this invitation in English yet, and surely you were the first to post here about it. The Swedish ME Society is doing a great job arranging high class seminars. You might have watched some that has been video recorded as e.g. the lecture by Dan Peterson. Hopefully they will have resources to video record this seminar too.
     
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  3. Sasha

    Sasha Fine, thank you

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    That's great - the more we have people talking about biomedical research on video online where others can see it, the easier it's going to be to get other clinicians and researchers all over the world clued up.
     
  4. Helen

    Helen Senior Member

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    @Sasha. You are right indeed. I will forward your "greeting" to the ME Society :) and keep an eye on when the seminar has been hold and a video could be expected.
     
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  5. Sasha

    Sasha Fine, thank you

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    Thanks, please do - always happy to see these positive events flagged up on the forum. :thumbsup:
     
  6. Helen

    Helen Senior Member

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  7. Helen

    Helen Senior Member

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    The video recordings from the seminar are now posted on Youtube:

    Introduction to the seminar


    Orthostatic Intolerance and Pediatric ME/CFS
    by Dr. Peter C. Rowe


    Pedriatic ME/CFS
    by Dr. Nigel Speight



    Pediatric ME/CFS- infections, endocrinopathy and immune dysfunction by Dr. Amolak S Bansal


    Final panel discussion


    Edit: In this thread the lecture by Dr. Bansal is discussed
    http://forums.phoenixrising.me/inde...ls-talk-posted-on-you-tube.33978/#post-527108
     
    Last edited: Nov 24, 2014
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  8. Bob

    Bob

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  9. NK17

    NK17 Senior Member

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    Thank you guys @Helen, @Sasha and @Bob for this thread and for posting the videos!

    Looking forward to watch them in the coming days ;).

    And yes ME conferences' videos are an extremely important educational tool, I usually forward them to my new PCP, rheumatologist and gastroenterologist.
    If I'm lucky they might watch them and learn a bit ;).
     
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  10. alex3619

    alex3619 Senior Member

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    The Peter Rowe video has a slide at 7:43 that indicates why some get NMH and others get POTS. Its about the adrenal response. Its largely about the norepinephrine to epinephrine response, or noradrenaline to adrenaline.

    One thing I find interesting is that many have both POTS and NMH.
     
    Last edited: Nov 24, 2014
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  11. Helen

    Helen Senior Member

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    The Swedish ME/CFS patient organization has now reported about the meeting on their homepage. I hope it will make sense even after the google translation below..

    Note that the day before the seminar there was a round-table-discussion with the researchers/attending doctors that also seems to have been a success. The meeting lasted the whole day and ended with a dinner. As you can read Dr. David Bell also arrived to participate together with ME/CFS doctors from UK, US and the Northern countries -except Norway.

    http://rme.nu/node/375

    There is also a blogpost about the two days by the moderator of the seminar, Michael Silvestri.
    http://pestosilvestri.blogspot.se/2014/11/om-sjukdomen-me-hos-barn-och-unga.html

    I hope google translations will make sence , so that all that are interested can share the feeling of hope and progress that is in the articles .
     
    Last edited: Nov 26, 2014
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  12. Helen

    Helen Senior Member

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    Google translation of the blogpost by Michael Silvestri
    http://pestosilvestri.blogspot.se/2014/11/om-sjukdomen-me-hos-barn-och-unga.html

    ( I made some shorter paragraphs than in the original text to make it easier to read )


    Thursday, November 13, 2014
    On the disease ME in children and young

    Yesterday I was a moderator at a very important and interesting seminar on ME (myalgic encephalomyelitis) in children and adolescents. It was arranged by the National Association for ME patients, RME.

    The president of RME Stockholm, Henrik Fransson, welcomed along with the outgoing County Commissioner Stig Nyman (KD) took the opportunity to give a description of the position of the ME-care in California. I will return to it in a separate blog post.

    The program is otherwise included presentations by researchers and clinicians from the US and UK, as well as a nice - and actually hopeful - description of what it is like to be young ME patients. In the latter case, it was Nathalie Gillberg, 14, and her mother Camilla who shared their experiences.

    First out of the international speakers were Dr. Peter Rowe from Johns Hopkins Children Center in Baltimore, USA. Peter gave a detailed description of orthostatic intolerance, ie, the inability to stand up or be in the upright position. A symptom that is familiar to many ME patients.

    Dr. Rowe touched both dietary aspects, eg milk allergy, but also another disease, Ehlers Danlos Syndrome (EDS), where the protein collagen is more or less the defect which may affect e.g., blood vessel elasticity. The latter, said Dr. Rowe, may in turn affect the distribution of blood in the body, such as manifested in the right orthostatic intolerance. What is interesting here is that the diagnoses EDS and ME certain extent seem to be linked.

    The next speaker was Dr Nigel Speight from The University Hospital of North Durham, UK. Nigel stated directly that he is not academics (researchers), but he has 30 years of experience in clinical work, which includes a large number of ME patients, 700 if I get it right. Enough so important qualifications must say!

    Among them are 30 who have been court cases where the social authorities moved in and tried to forcibly take care of children because they have not understood what ME is. In one case (or more?) Had made the diagnosis Munchausen by Proxy which, if properly addressed, can save the child's life, but if incorrectly set for an ME sick child can be quite devastating detention and improper care, etc .. .

    Dr. Speight was sure that today there is no real treatment for ME. Therefore, he argued that instead we should speak of "management", ie, to "manage" the disease as best they can based on what we know.

    At the same time, he stressed that it is important for health care is: "Do No Harm", ie, do no harm!
    Unfortunately, it is enough so that the level of knowledge on the whole is so low in health care that the risk is that ME patients can have their disease worsening rather than mitigated by incorrect treatment procedures. Of course it is not acceptable!

    In that context it may be mentioned that Dr. Speight described the treatment modalities cognitive behavioral therapy (CBT) and Graded Exercise Treatment (GET) that greatly overestimated the basis of proven efficacy.

    Instead, he made it clear that ME is a "genuine organic condition", which I would freely translate to a true biomedical condition. And, as an example, at least in some cases successful form of treatment, mentioned Dr. Speight immunoglobulin, ie, giving the patient a mixture of antibodies.
    Based on his extensive clinical experience gave Dr. Speight examples of both bright, hopeful cases where the young patient recovered, but also deeply tragic cases where things have gone really bad.

    Last out of the physicians was Dr. Amolak Bansal from St Helier Hospital, Carshalton, UK. I had the privilege of listening to Dr. Bansal already in the spring, at Invest in ME in London, and then I thought it was extremely apologetic that he had only 15 minutes available. Therefore, it was gratifying that he had nearly an hour to describe the immunological, viral and endocrinological aspects of the disease.

    Dr. Bansal said that the UK is estimated 0.2-0.4% of the population have ME. To my knowledge, this is in line with the corresponding estimates in the United States (about 0.4%). Translated into Swedish conditions, it would mean that about 40 000 Swedes have the disease ME, and these are then 8000 in Stockholm County. A significant proportion of the population!

    ME appears to be more common among women (4 times more common than in men), and the disease onset around 20-45 years of age. An interesting observation that research has shown is that the diagnosis of ME is linked to specific personality traits. What these are, unfortunately, we could not get into, but in context it may be mentioned that ME patients found to have a higher average IQ compared to the normal population (!)

    Dr. Bansal described the different viruses and other infectious agents that in one way or another have been associated with ME, but mainly he continued to Epstein Barr virus (EBV), a member of the herpesvirus family. Common to herpesviruses (including herpes simplex, EBV and chickenpox virus, VZV) is that there are viruses that for thousands of years have adapted to humans. This means that when we are infected with such a virus so we carry since the virus (usually latent) for the rest of their lives.

    Particularly interesting with EBV is that this virus infects B lymphocytes, ie by immune cells producing antibodies and the virus has the ability to transform B lymphocytes to a kind of immortal cancer cells. Therefore it is interesting that "immunomodulatory" treatment with immunoglobulin or Rituximab seems to have a beneficial effect on the ME patient's condition.

    But Dr Bansal had time during his presentation describing how complex picture of ME is based solely on an immunological (and microbiologically) perspective. In a conversation we had after the seminar, he was also clear that in the case of, for example, Rituximab, so definitely needed more research before we can say anything with certainty about the possible efficacy and safety relating to the treatment option.

    As the last speaker of the day then gave 14-year-old Nathalie Gillberg and her mother Camilla a fine, and actually hopeful description of what it is like to live with ME. Both have been diagnosed with ME. Nathalie described how her teachers and classmates at school, at home in Borås was both sympathetic and considerate when it comes to her need to sometimes be able to take a short rest, sometimes maybe "flex" with a little sleep or go home earlier, sometimes leaving gym or do easier exercises.

    When it's time for the written test you can Nathalie sometimes get a customized form of examination depending on her condition. The school nurse knew about the disease ME already when Nathalie and Camilla told me about the first time. This most likely unusual, but is obviously beneficial!

    An additional strength is obvious also that the mother Camilla has personal experience of the disease and carries great knowledge of it, which she gladly share to those who need it at her daughter's school.

    On the positive that both Nathalie and Camilla have contact with their own physicians who exhibit good treatment with respect for the ME patient with a positive attitude towards dialogue. It contributes to a trust which is a necessary foundation for a great treat!

    Camilla also mentioned that she had been involved in starting a sub-section for children / young people and parents in RME. There is also a Facebook group for these target groups.

    In summary, this is a good, important seminar organized by RME. The need for more research and increased and diversified knowledge is great in general when it comes to ME. When it comes to ME in children and young so dark figure probably significant, which means that the need is even greater in this population.

    The only way for us to really make progress is that we meet in different forums of this kind, and continue a constructive dialogue between patients / patient organizations, professions in health care and politicians who must make wise decisions.

    Speaking of the latter so I will comment on in a later separate insert the new additional mandate of the choice of care aimed at improving rehabilitation services include ME patients.


    Posted by Michel Silvestri PM. Thursday, November 13, 2014
    Labels: children, CFS, ME, National Society for ME patients RME, young, Vårdval
     
    Last edited: Nov 26, 2014
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  13. Helen

    Helen Senior Member

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    Google translation of the report from the round-table-meeting and the seminar
    http://rme.nu/node/375

    Round Table Meeting, November 11
    14 doctors from the US, Britain, Denmark, Finland and Sweden met for a full day on Kristin Hov Malmegård in Stockholm to discuss the research and share the experience of his work with ME / CFS. Chairman Erik Nilsson and Vice-President Lisa Forstenius from RMEs National Executive Committee attended the meeting.

    Carl Gerhard Gottfries, Gottfries Clinic, and Jonas Blomberg, Uppsala University, held a special presentation on their research, which was appreciated by everyone at the meeting.

    Despite the seriousness mood was high during the meeting and Peter Rowe, a specialist in ME / CFS in children and young people at Johns Hopkins Hospital in Baltimore, Maryland, said afterward that he had never been on this type of meeting where the atmosphere was so open, generous and pleasant. All the scientists / doctors were very happy with the day and called for more of these meetings. Doctors from Denmark and Finland wanted to get more opportunities to meet with their Nordic colleagues. RME will therefore regularly organize more roundtable meetings in the future. The day ended with a dinner.

    To our great joy came dr. David Bell, United States, by its own interest, both to the roundtable meeting and seminar. Bell has extensive experience in ME / CFS in children and adolescents. We have tried to get him to Sweden to give lectures a few times in recent years, but he's due Disease had to cancel his trip at the last moment.

    The value of meetings such as this can not be over emphasized. In particular, the exchange of experiences between researchers / doctors and how this for ME / CFS work forward important, but also the purely social, because many of the scientists / doctors are isolated in their work with ME / CFS and often encounter resistance from colleagues and authorities. This emerged very clearly at the meeting.

    In the working round table meeting included Solveig Orosco and Lisa Forstenius.


    The seminar on children and young people with ME / CFS, November 12
    Michel Silvestri, who moderated the seminar, has written a very good summary of the meeting:
    http: ... //pestosilvestri.blogspot.se/2014/11/om-sjukdomen-me-hos-barn-och-u

    It was just over a hundred registered for the seminar, but several avanmälde just before the seminar or do not come at all, so it ended up being 82 listeners. Someone who was not on the entry list may have slipped in! The majority (65%) of the audience were medical and school staff, which we think is very gratifying.

    Henrik Fransson, chairman of the RME Stockholm, opened the meeting, after which the Stig Nyman (KD) from the Stockholm County Council, welcomed everyone before the word was handed over to our speakers. The seminar was held at County Hall in Stockholm. The audience showed great interest in the respective lectures and many questions were asked during question time. Camilla and Nathalie Gillberg's story about how their family has been affected by Nathalie have ME / CFS touched us all deeply. During the break combined group RME Children and young people, for whom Camilla is the contact, all parents of children with ME / CFS, so they had the opportunity to meet, talk and make connections.

    After the seminar went lecturers, other researchers / doctors and officials out to dinner together.


    Film of the Seminar
    The seminar was filmed by Anders Ankarberg, a board member of both the RME Sweden and RME Stockholm. It can be seen under "Latest News" on our website:
    www.rme.nu


    Media
    We hired a freelance journalist Monica Klasén McGrath to help us with media contacts, but despite her efforts, nobody from the media who came to the seminar. Monica continues to contact various media in the hope that someone does something retrospectively if the group of children and young people with ME / CFS. In contrast, took the National Association for school nurses contact with RME and asked us to write an article for their magazine National Health Service, published in February. RMEs board member Michael Want Beck, who is a school psychologist, is writing it.


    Preparation and implementation of the arrangements
    As you can imagine demanded preparation and implementation of these two events much work. The work began in February this year when we sent the first e-mails to lecturers, asking if they could come to Sweden in November. We were delighted when all three said yes!

    The working group for the seminar included Solveig Orosco, Anders Ankarberg and Henrik Fransson, as all three are relatives of ME / CFS sufferers as well as Lisa Forstenius, ME / CFS sick. A number of RME members also helped us with the practicality of the seminar, to show people rebuke, distribute materials to the audience, sell / distribute information materials about ME / CFS at the information table, and much more. Erik Nilsson took the photos that we attach here.

    Large and warm thanks to all who helped make these two events so successful!

    For RMEs Board,
    Lisa Forstenius
    vice Chairman
     
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  14. alex3619

    alex3619 Senior Member

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    The slide said 30, but Nigel commented it has since risen to 40.
     
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  15. NK17

    NK17 Senior Member

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    Very very sad and disturbing statistic coming out of the UK!
    We can only thank groups such as the Swedish RME and of course doctor Speight and Tymes Trust in the UK for their endless effort to bring awareness of the disease, true justice and humane treatment of PWME.
     
    Last edited: Nov 27, 2014
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  16. NK17

    NK17 Senior Member

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    Thank you @Helen for posting the above transcripts of the very fruitful Swedish seminar on pediatric ME.

    Having been a youngster with ME and now a parent with ME with a child mildly affected make me appreciate even more the fruits of these seminars.

    It is clear that we need more of these!
     

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