ME – A “Controversial” Illness…..We’ve Had Enough!

I am invisible2Hi everyone. Still under the weather, so I’m sharing a couple of good stories focusing on Myalgic Encephalomyelitis (ME). I hope you find these informative and interesting.

Take care,

Linda Williams Stirling

ME – A “Controversial” Illness!

Sally Burch, re-blogged from “Just ME
When I tell people that I have ME, I am sometimes told that it is a “controversial” illness – as if I perhaps had a choice in succumbing to it! The controversy is largely due to name Chronic Fatigue Syndrome now favoured in both UK and USA, and which many patients (myself included) believe belittles the true nature of ME.
Part of the problem is that doctors do not yet fully understand how ME symptoms are caused – nor is there yet an easy diagnostic biomarker.  This allows the psychiatric lobby to step in and describe the illness as just a fatigue that is all in our minds!!Many diseases that are now understood, were previously declared by psychiatrists to be the patient’s elective illness behaviour. Or put another way, the patient was succumbing to “hysteria” and the illness was all in their mind.  It is not so long ago that MS was described as hysterical paralysis!

DanceintheRain

In many ways ME patients are still being treated like this because both the UK and USA call our illness Chronic Fatigue Syndrome instead of the full name of myalgic encephalomyelitis, as described by the World Health Organization.

Under the NICE guidelines, here in the UK we are offered only Graded Exercise and Cognitive Behaviour Therapy as “treatments”. The first is damaging and the second is only useful if it is given to help us cope with being so incredibly ill. Neither treat ME in the sense that neither can help us to recover our previous good health.

The IOM (Institute of Medicine) contract,  in the USA, has been set up to re-define ME.  It is likely to make matters much worse. There is little enough funding getting through to researchers keen to find the real biological problems faced by ME sufferers. There is a very real worry that this IOM panel will favour a psychiatric
approach to ME and in doing so further frustrate the biomedical study of our illness.  There are many on this IOM panel who support the psychiatric view point of ME as simply a form of chronic fatigue.

However there is light and hope.  Work has been done that shows very real differences between ME patients, and those who are simply fatigued or deconditioned. This link describes a Two Day Exercise Test that shows how Post Exertional Malaise is a big problem for sufferers of ME and that this does not show up for deconditioned controls. Indeed this has now been suggested as a biomarker for ME

.Hope Whispers

Surely this should be evidence enough to stop the psychiatric nonsense that this illness is simply our mistaken beliefs about our state of health? Yet for some reason the importance of this two day testing is being ignored.

The article below describes how Susan Kreutzer, today, led a demonstration to tell the Department of Health and Human Services (USA) that “We’ve had enough!”

WE’VE HAD ENOUGH!

Getting a demonstration together is difficult when so many ME patients are confined to their homes. and those that manage to “get out” may LOOK normal but their “payback” comes later. (Ask me how I know this!)

So to round off my ramble, I’d just like to say to Susan Kreutzer and her team of helpers: “THANK YOU!  You are amazing people for taking this stand. Many more of us are with you in spirit if not physically by your side. My signature is up there somewhere on your banner, and it’s yelling support for this action! “Perhaps now is the time that this patient community finally starts to get noticed?

And heard!

Sally Burch

pain ends“WE’VE HAD ENOUGH”

by Erica Verrillo
December 9, 2013

On Monday, December 9, 2013, a small group of ME/CFS activists gathered in front of the San Francisco Federal Building to protest the IOM contract. The demonstration was organized by Susan Kreutzer, a former attorney and long-time ME/CFS patient.

The purpose of the demonstration was to draw attention to the continuing governmental neglect of over one million ME/CFS sufferers in the United States – 17 million worldwide – and to hand deliver two petitions totaling 6,000 signatures to the regional HHS office located in the Federal Building. The petitions demand an increase in funding for research into ME/CFS, the immediate adoption of the Canadian Consensus Criteria (CCC) to define the illness, the canceling of the IOM
(Institute of Medicine) contract to define ME/CFS, and officially dropping the misleading name “chronic fatigue syndrome” in favor of the term used by the World Health Organization, myalgic encephalomyelitis (ME).

To start the event, Jeff Kreutzer and Edward Burmeister unfurled a seven-by-six-foot banner displaying the 3,000+ signatures from a petition initiated by Patricia Carter. The 95-page petition demands the cancellation of the IOM contract and the adoption of the CCC. A second petition with nearly 3,000 signatures, started last summer by Mary Dimmock, also demands the adoption of the CCC and the elimination of the demeaning name “chronic fatigue syndrome.” To bring the point home that ME/CFS affects people everywhere, Susan arranged a display of flags representing the home states and countries of those who had signed the petitions – all 50 states, the District of Columbia, Puerto Rico, and 34 countries spanning the globe.in my shoes

Susan Kreutzer, Jane Pannell, an RN disabled by ME/CFS, and Edward Burmeister spoke about the inequities of NIH funding, the ramifications of yet another vague definition resulting from the IOM contract, and the devastating impact of the illness on millions of people all over the world.

Nothing could express the frustration of the ME/CFS worldwide community better than the comments on the petitions. “Walk a mile in my shoes!” says Carol Baker (Australia) in a direct challenge to officials who have designed policies preventing funding and halting the development of treatments. Many more patients wrote that there was “no way to describe this illness” and explained how they had lost their careers, friends, and lives to the disease. In one particularly poignant message, Jana Buzolic (Croatia) wrote, “I got ill when I was 22 years old. This is when my life ended and the twilight began.”illness hurts

Tomorrow Susan Kreutzer will again demonstrate at HHS headquarters in Washington, DC. We can only hope that when she hand delivers the bound copies of these petitions to Secretary Sebelius, and to 21 Congressmen and Senators on Wednesday, that they will take the time to read what these 6,000 people have written.

“For 30 years,” says Susan, “we have waited in line for the government to listen to us. We’ve had enough.”

Re-blogged from ProHealth, Inc.

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