Patient Tasha Kelemen on The Pulse WHYY (an NPR station)

Listen to The Pulse (on WHYY) Fridays at 9 a.m. and Sundays at 10 a.m. on WHYY-FM.

“March 12, 2015 The Pulse

Chronic fatigue syndrome gets new name, enhanced recognition

Tasha Kelemen, 42, directs a local non profit. She doesn’t look sick, but she’s had a hard time convincing peers — even doctors — that anything is wrong with her.

“A typical experience will be the resident comes in, looks at my folder, sees that I have chronic fatigue syndrome listed as my primary diagnosis, and then says to me, ‘Well, I think that must be what I have,'” she recalls, laughing. “You sort of learn that there’s no point, that you sort of have to control your anger.”

The condition known as chronic fatigue syndrome is mysterious and complex. It has stumped the medical system for centuries. There’s no test for it, which Kelemen and others say, along with its current name, makes the condition easy to dismiss.”

Listen to the interview here:

http://www.newsworks.org/index.php/thepulse/item/79344-chronic-fatigue-syndrome-gets-new-name-enhanced-recognition

The final NIH P2P report will be out on Tuesday 14 April 2015

ODP had originally indicated that the final report would be published a couple of weeks after the end of the public comment period (16 Jan 2015). The time frame now seems to be more like 12 weeks after the end of the public comment period.

(fwiw – there was a similar delay in publication of the final opioid P2P report. It was due out in October 2014 and was not published until Jan. 2015).

From the ODP (Office of Disease Prevention) website:

“Draft Report

Download the Draft Report (PDF – 3.45 MB)

An unbiased, independent panel developed a draft report of the 2014 NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which summarizes the workshop and identifies future research priorities. The public comment period is now closed. The final report will be available on the ODP website on Tuesday, April 14, 2015.”

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources#draftreport

(re)Naming ME

There are intense reactions to the name IOM (Systemic Exertion Intolerance Disease, SEID) has proposed for this disease.

It seems that the naming of illnesses is more complex than we would like to believe. Pages 58-59 of the IOM report (http://books.nap.edu/openbook.php?record_id=19012) has Box 3-2 which lists the names submitted to the committee in response to their request for input on the name. Text near Box 3-2 describes the committee’s rationale for SEID.

Astoundingly among the names submitted were “chronic fatigue”, “chronic fatigue syndrome”. Several other submissions included the term “fatigue”. Seriously????

But people are not keen on SEID. In fact it seems that many people are wrapped up in discussions about the name and that the contents of the report seem to be of little interest or concern.

Dr. Lenny Jason has written a blog post about disease names and SEID:

“How disease names can stigmatize

By Leonard A. Jason

• February 16^th 2015

On 10 February 2015, the long awaited report from the Institute of Medicine (IOM) was released regarding a new name — Systemic Exertion Intolerance Disease — and case definition for chronic fatigue syndrome (CFS). Because I was quoted regarding this report in a New York Times article, in part due to having worked on these issues for many years, hundreds of patients contacted me over the next few days.

The reaction from patients was mixed at best, and some of the critical comments include:

• “This new name is an abomination!”
• “Absolutely outrageous and intolerable!”
• “I find it highly offensive and misleading.”
• “It is pathetic, degrading and demeaning.”
• “It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”
• “(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”
• “The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”

Several individuals were even more critical in their reactions — suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome. Patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive.

Please read the rest of the post here: http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/#sthash.obiMRbIj.dpuf

A letter to the king of Norway from young Norwegians with ME

“Letter to King Harald of Norway from Martin and 58 other young people with M.E.

ME mum’s confessions proudly presents an important letter to King Harald from Martin (17). The letter is also signed by 58 other children and youngsters with M.E. (Norwegian original)

…

A shortened version of the letter was published in the leading Norwegian newspaper aftenposten.no and was also in the printed paper. In the paper, this was an important contribution to the ongoing debate on M.E. We recommend reading the full version. Both the letter and the following quotes make a strong impression.

…

Dear King Harald,

I write to You because You are our King and have shown that you care about the weak in our society. I also know that you are concerned about children’s and young peoples’s situation in Norway. I write primarily on behalf of my brother and me, but also for many other children and young people suffering from the disease M.E. or myalgic encephalopathy. Having lived with this disease most of my life, I increasingly ask myself the question:

Is Norway really the best country in the world to live in for everyone?
Living with M.E. is a terrible situation by itself, but that’s not why I’m writing to you. I write because especially children with M.E. and their parents today are terribly distrusted and misjudged …”

http://fryvil.com/2015/02/05/letter-to-the-king/

The IOM report – Tuesday, 10 February 2015

“The Institute of Medicine’s Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will hold a public release event for its consensus report on February 10^th, 2015 from 11:00 am-12:00 pm EST at the Keck Center of the National Academies in Washington, D.C.  (500 Fifth Street NW, Washington, DC).

Interested individuals will be able to attend the public release event in person or virtually via webcast. “

More info:

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2015-FEB-10.aspx

EDIT: Link for registration:

http://www.surveygizmo.com/s3/1957594/Public-Release-of-the-Report-by-the-Committee-on-the-Diagnostic-Criteria-for-Myalgic-Encephalomyelitis-Chronic-Fatigue-Syndrome

Many thanks to each of the advocates who searched for this link!

link to Miriam Tucker’s article Chronic Fatigue Syndrome: Wrong Name, Real Illness

 

http://www.medscape.com/viewarticle/837577_2
“Chronic Fatigue Syndrome: Wrong Name, Real Illness
Miriam E. Tucker
January 08, 2015

Introduction

Sufferers of what has been called chronic fatigue syndrome (CFS) are challenging patients, presenting with complaints of postexertional
malaise, persistent flulike symptoms, unrefreshing sleep, “brain fog,” and often a long list of other symptoms that don’t seem to fit any
recognizable pattern. Some appear ill, but many don’t. And the routine laboratory tests typically come back negative. ….”

http://www.medscape.com/viewarticle/837577_2

P2P draft report has been posted

Click to access 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  German, Swedish, Dutch, Italian, French, Spanish, Czech 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