P2P draft report has been posted

https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

“Voices from the Shadows” free to view until 31 December 2014

A must-see film, “Voices from the Shadows” is intense and not suitable for young people with ME or children

From the makers of the film:

““Voices from the Shadows” is now available to view free on Vimeo with a promo code

To go to Vimeo click here  then click on the ‘rent for $3′ button and enter the promo code VOICES  

Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections. (See Bristol Watershed event videos)

A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations very  similar to those shown in the film are taking place right now, both in the UK and in other countries.

Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues – from parliament buildings to cinemas, universities and homes – from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014.

We do not consider this film to be suitable viewing for children and young people with ME.

It can be rented to view online at $3 for a week’s access – or at the moment it is free with a promo code – VOICES

The original “Trailer” can be watched  here on Youtube or here under the About the film pages on Vimeo.

Watch the “Introduction” to the film – the first 4 mins – in English here  – or with subtitles in  GermanSwedishDutchItalianFrenchSpanishCzech or Japanese on Youtube.”

Please send a card

Reposted with permission


“Mirjam Knapp – cards wanted

Our medical adviser Dr Nigel Speight has been in touch to seek members’ support for Mirjam Knapp, a 15 year old German girl who is being kept in hospital and subjected to an ‘activation regime’. So far the result of this ‘activation regime’ has been continued deterioration, to the point that Mirjam is now completely bedridden and needs tube feeding.

The ‘activation regime’ continues, and currently takes the form of being forced to sit upright for some time each day with the help of a rigid corset made specially. Which is all the that she can ‘do’.

This regime is against her strongly expressed wishes. However the hospital authorities have declared that the girl lacks competence to refuse her “treatment”.

Because her mother has objected to the regime she has had her parental rights removed and her visitation rights are limited to 3 hours a day, and might be stopped at any time.

Dr Speight thought it would be good for Marjam to receive cards to let her know that others are thinking of her. We agree.

If you would like to send a card. Marjam’s address in hospital is:

Mirjam Knapp
Klinikum Kassel
Neuropaediatrie Station F81Monchebergstrasse 41-43
34125 Kassel
Germany

Nigel suggests people just say something like “We are SO sorry to hear how unwell you are, and we heartily wish you can soon get home to your mother”. You might want to let her know that you heard about her via an ME Charity to which you belong.”

P2P videos are up

The videos of the NIH P2P for ME(cfs) meeting have been posted:

Day 1

http://videocast.nih.gov/summary.asp?Live=14723&bhcp=1

Day 2

http://videocast.nih.gov/summary.asp?Live=14727&bhcp=1

Vote Each Day Until Dec 10!

The National ME/FM Action Network (http://www.mefmaction.com/) in Canada is competing in the Avivia Community Fund for up to $100,000 for research! You can help with a daily vote Dec 1-10.

Link to Vote: https://www.avivacommunityfund.org/ideas/acf19712
(shortlink: http://bit.ly/1HPZevo )

Link for Instructions (including how to get a daily reminder):
http://forums.phoenixrising.me/index.php?threads/vote-now-and-daily-until-10-dec-to-win-100-000-for-canadas-me-fm-charity-in-aviva-contest.34119/ (shortlink http://bit.ly/1A9F2zv )

Videos from Stockholm seminar on ME(cfs) in young people

The videos are mostly in English

Regrettably the one with Nathalie (young person with ME(cfs)) and Camilla Gillberg is in Swedish.

 

http://rme.nu/seminarium-2014
http://translate.google.com/translate?hl=en&sl=sv&u=http://rme.nu/seminarium-2014

Goggle translate:

Seminar on children and young people with ME/CFS – 2014

On November 12, 2014 organized the National Association for ME patients a seminar on children and young people with ME/CFS. The
seminar was conducted in cooperation with RME Stockholm and RME Scania and held at County Hall in Stockholm. They filmed lectures accessed through the links below.

(Second speaker – Stig Nyman – in Swedish) Introduction- http://youtu.be/mMssaa7i5y0 Henrik Fransson, chairman RME Stockholm, Stig Nyman, councilor

Orthostatic intolerance and ME/CFS in children- http://youtu.be/7OMEGjBWQdo Peter C. Rowe, Johns Hopkins Children’s Center, United States

ME/CFS in children – Diagnosis and Treatment- http://youtu.be/kl5EfvzsL88 Nigel Speight, The University Hospital of North Durham, UK. Dr. Speight also discussed the “assault” as health professionals and other agencies expose children to because of feldiagnosticering in cases of ME/CFS.

The immunological / viral / endocrine interactions in ME/CFS- http://youtu.be/VUDhI0gXbbE Dr. Amolak S. Bansal, Department of Immunology, St Helier Hospital, UK.

(In Swedish) Living with ME/CFS as a child- http://youtu.be/tAjEryHR4L4 Nathalie Gillberg 14 years and suffering, and Camilla Gillberg, parent says.

Panel Discussion- http://youtu.be/-60Bzf35OLY

Dec 2014 CFSAC registration is now open – correction

For those who are interested

Agenda:

https://www.blsmeetings.net/cfsac/documents/agenda.pdf

To registration:

https://www.blsmeetings.net/cfsac/

NOTE – Public comment is limited to 3 minutes. To be included in the public record written comment must be submitted by Monday 26 24 Nov 5pm ET.



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