Posts Tagged 'ME'

Dear HealthCare Professional

We have seen all sorts of comments by healthcare professionals about patients with ME (myalgic encephalomyelitis) and what is “really” wrong with them.

These are just a few comments (and what is implied by those comments).

They just don’t want to work (they want to be on disability, they stand to gain from disability),

are bored (so they spend their time imagining symptoms),

can’t cope with everyday stress (they need psychological help),

don’t exercise (and are deconditioned),

are fat (and deconditioned),

don’t want to be responsible for themselves (they want to go on disability and live an easy life),

want stimulants, narcotics, etc (they are drugseekers),

want disabled parking tags (because disability is a perk).

 

Dear Healthcare Professionals,

Comments about patients with ME (myalgic encephalomyelitis) such as those made by healthcare professionals like you are painful. I hope this post helps you understand some of our pain and frustration.

My two young adult sons have ME which is a complex and challenging disease.

Both of my sons meet the IOM criteria (this link is to The Clinician’s Guide and you can access the full report ). They also meet the CCC criteria for ME.

One son suddenly became sick since he was 12 years old. He is in his early 20s now.

My other son gradually sick about 15 months later. He too is in his 20s.

Neither of my sons are/were lazy.

A few specifics about my sons.

One son taught himself to multiply before he went to kindergarten.

The other was reading middle school level books at age 5.

They were lively, curious, and fully engaged with life, family and friends.

At the time they got sick they were competitive swimmers, swimming upwards of 20 miles a week.

The sudden onset of one son’s illness rendered him housebound, unable to do schoolwork, inexplicably unable to do mental math that had been effortless for him at age 5, unable to socialize, unable to leave home for things other than medically related appointments. In other words – no fun.

My other son had a gradual onset and he too is housebound and partially bedbound, unable to retain what he reads, unable to socialize, unable to leave home for anything other than medically related appointments. In other words – no fun.

In the past 10+ years since they got sick my sons have diligently done everything suggested by healthcare professionals (including various specialists) – to little avail. Most medications we have tried have produced no benefit and few produce enough benefit to endure their adverse effects.

My sons have not been able to learn to drive – frequent, unexpected syncopal episodes, impaired decision-making, and slowed reaction times would make their safety and that of those around them a significant concern.

My sons’ limited capacity for (cognitive or physical) exertion is not a result of deconditioning.

For one son, the exertion intolerance (a hallmark of this disease) began quite abruptly with the sudden onset of his illness.

For my other son, the exertion intolerance and the disease revealed themselves more gradually.

And as I mentioned above, when they became ill, they were swimming at least 20 miles a week so they were in great physical shape. Therefore deconditioning is in no way an explanation of their exertion intolerance.

These days cognitive and or physical exertion in excess of the strict limits imposed by this horrible disease, produce a dramatic exacerbation of symptoms (post-exertional malaise or PEM) that can last for weeks and render my sons even more disabled than their baseline (which on a good day is about 30% of normal).

All too often I see comments by healthcare professionals saying these patients want stimulants, narcotics, Xanax, disability and disabled parking tags.

My sons take no stimulants (bad reactions to them), no narcotics, no Xanax, etc.

Neither of my sons want to use the disabled parking tag that we have – they don’t want to feel labeled by doing so. So we use the tag quite sparingly – but then again my sons are out of the house so rarely that any use is sparingly.

My sons don’t get SSDI (Social Security Disability) – they have never been able to work so therefore never accrued work credits to qualify for SSDI and having never worked, they never had the option of long-term disability insurance.

Since my sons’ illness onset and because they are so severely impaired by this disease, I have been their 24/7 unpaid caregiver.

There is NOTHING to gain for us with this disease and we do our best not to think about the significant losses (independence, educational aspirations, making a difference in the world, spontaneity, vacations, and on and on).

So you see, your comments about us are not accurate. Nor are they appropriate. And inaccurate, inappropriate, disparaging, and or demeaning comments such as yours cause significant pain and detract from your job which is to help patients.

We don’t need or deserve additional pain and or hardship in our lives.

In public and in private, we deserve respect, compassion, appropriate diagnoses and appropriate treatment. NOW!

Sincerely,

A parent of two patients with ME

May 12th is ME Awareness Day

Stop mistreating ME

Mary Dimmock and her son have produced a valuable resource for us.

Mary explains the origins and significance of this resource:

Five years ago, I was working in the pharmaceutical industry when my son fell victim to myalgic encephalomyelitis (ME). Overnight, everything I understood about medical care and about how diseases are researched and treatments developed was suddenly turned on its head. This wasn’t medicine or science as I knew them but rather medical disbelief and disdain and a quagmire of conflicting and irreconcilable disease labels, definitions, theories and research findings. My son’s life and his entire future was and is being held hostage by a parade of biases, disinterest, personal agendas, politics and sloppy science that had been going on since before he was even born.

The bald fact is that in the last thirty years, HHS has not only failed to produce a single meaningful outcome for patients but has turned ME into a pariah. We need a sweeping reboot of every single facet of HHS’s public policy toward this disease.  But HHS has been unwilling to make any meaningful changes, let alone the magnitude of changes needed in the timescale needed to address the damage that has been done.

To change the future of ME patients, we have to change the politics and the public perception of this disease. We need to break down the walls of confusion and misinformation that have buried ME. We need to find new ways to tell the shameful story of what has been done to ME patients.

With the intent of providing a tool to help with such efforts, my son and I compiled a detailed, referenced document titled Thirty Years of Disdain: How HHS Buried ME. This document is intended to bring together in one place key events in the story of HHS’s failed public policy toward this disease. 

The resulting document is long, making it more suitable as a deep background reference. We are creating shorter, targeted pieces to focus on congressional leaders and the media. The community is welcome to use it if it’s of benefit in their advocacy efforts.  The document can be accessed at http://bit.ly/The_Burial_of_ME.

Comments are welcome and can be sent to medimmock@gmail.com. I will do my best to respond.”

Many thanks for Mary and Matthew!

(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 16th 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 10th, 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

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