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Recovered CFS/ME Patient Goes to Washington, D.C.

MIke Dessin testifies for the CFSAC about his remarkable recovery


Mike Dessin testimonyLast year around this time, Mike Dessin almost died from severe myalgic encephalomyelitis. He credits his recovery to a physician in Ohio who treated him with an experimental twist on a time-tested treatment from Germany: neural therapy. Neural therapy usually entails injecting Procaine (Novocain), a common local anesthetic, into certain areas of the body. This doctor uses homeopathics rather than anesthesia. The treatment is based on the theory that trauma can produce long-standing disturbances in the electrochemical function of tissues.

MIke’s story is well documented on Cort Johnson’s excellent new forum “Phoenix Rising” here: New Day Treatment.

Since recovering much of his health, one of Mike’s goals has been to help educate physicians about CFS/ME through his own experience with this poorly understood disease. Below is his recent testimony for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in Washington, D.C.:



Here is the transcript of this speech, including the part that he was unable to read at the end due to time limitations:

Hi my name is Mike Dessin, I’ve had Myalgic Encephalomyelits for 14 years, a disease that is unjustly named Chronic Fatigue Syndrome in the U.S. I had one of the most severe cases of ME/CFS ever recorded, with subsequent remission.

At the worst stage of my illness, which was about a year ago, I suffered beyond what most humans can comprehend.

I was completely bedridden and unable to lean up more than a few inches. I was unable to read, write, understand words when spoken too, or complete a thought process. Even a bit of thinking would hyper stimulate my nervous system too much. I had severe dementia. I couldn’t see the walls around me. Neurological dysfunction too obscure to put into words. In the last month before my recovery I was unconscious an estimated 90% of the time, not sleeping but literally unconscious. I was basically comatose.

I’m nearly 6’3, and last December I weighed 102 pounds. I had heart failure, severe pancreatitis and my lungs collapsed. My body was producing just enough energy to sustain a heartbeat.

To make things even worse, I was confined to a pitch black room isolated from the world. Unable to tolerate the slightest bit of light or noise much of the time. I had sensory overload so bad, I couldn’t be touched, as it was too stimulating. The consequences of being over stimulated resulted in further exhaustion and seizures.

In addition, I had EXTREME chemical and Electromagnetic Frequency sensitivities. Needless to say, I had to be in a very special environment to stay alive. It is painstakingly difficult to care for someone in the condition I was in.

I was as sick as an end stage AIDS and MS patient put TOGETHER. Immune deficiency similar to what an AIDS patient presents and more nervous system abnormalities than most MS patients. But I don’t have MS or AIDS. I have a disease called Chronic Fatigue Syndrome, which merely describes a symptom these diseases share.

I was left for dead; I was left withering away in my dark room. I was left to die due to the extreme lack of knowledge, compassion or regard by our medical community.

I had spent 10 years searching for help from doctors. I would hear, oh it’s JUST allergies, it’s JUST chronic Epstein Barr, it’s JUST depression, oh it’s JUST chronic fatigue syndrome and there is nothing we can do.

In the fall of 06’ I fell down in a hotel lobby in New York, I was suffering from CFS related exhaustion. My dad called 911 and the ambulance came to pick me up. On the way to the hospital, I told the tech “I had severe exhaustion and I had Chronic Fatigue Syndrome,” some know the disease as Myalgic Encephalomyelitis. The tech said there was no such thing as Myalgic Encephalomyelitis.

When I arrived at the hospital they said my vitals were normal and they put me in the psychiatric unit. I spent 24 hours there, where I was strip searched, repeatedly questioned about my personal life and given a cocktail of psychiatric drugs. Shortly after, I went into my last relapse that would nearly end my life.

Now who’s to blame for all of this? Clearly this disease and its millions of sufferers have been shortchanged in an EPIC way over the last 20 years by the government, medical community and the public at large. There has been a false stigma attached to the disease created by lack of research and inaccurate information disseminated by the CDC.

One major cause in this disease not getting the proper recognition stems from the naming and definition. The CDC wrongly changed the name of Myalgic Encephalomyelitis to CFS, in an attempt to undermine the serious nature of this disease, in favor of politics and economics.

In saying that, I am just one of thousands upon thousands of ME/CFS patients who are currently suffering near the extent I was. The only difference, they most likely won’t live to share their experience, unless things change. Many ME/CFS patients succumb to cancer, heart failure, pancreatitis and other co-morbid conditions that come along with having this disease. Many will die from suicide, committing suicide at a rate, double that of MS patients.

They are not committing suicide because of depression or stress. They are committing suicide for multiple reasons which include.

Suicide from decrease in quality of life, created by this disease. Their committing suicide because, the medical community, family and friends, don’t understand what is happening to them, and there is little hope for a cure.

They are committing suicide because they can’t bare the extreme physical and neurological dysfunction. They are committing suicide because many of them are inundated with toxic poisoning. They are committing suicide because they have dozens upon dozens of infections that human beings are not supposed to get. Their committing suicide because they have no safe place to go, no special facilities that have staff trained to care for ME/CFS patients. No special facilities that are free of chemicals or sensory stimulus. These patients have NO WHERE TO TURN.

So while these patients are being suffocated by toxins and destroyed by viruses, suffering greatly, the CDC’s answer, let’s spend money to research the effectiveness of cognitive behavioral therapy and graded exercise therapy.

I’m alive and speaking to you today because I got proper treatment. A treatment that focuses on the true biomedical basis of this disease rather than the MYTHS created surrounding this disease.

Myths, such as treating this disease with cognitive behavioral therapy (CBT) and psychological intervention should be primary treatments and coping mechanisms. As well as using Graded Exercise Therapy for increased exercise threshold. These therapies do not even come close to a real cure and can be extremely dangerous UNLESS they are integrated into a therapy that addresses underlying issues.

I realize that this is the easy way out for Reeves and his side kick Simon Wessley in the U.K.. If we think this is an effective treatment, why do I speak with thousands of ME/CFS patients who feel differently? Why is there no person in this room with true CFS …..who has been helped by these therapies?

Why have ME/CFS patients died from extreme relapses brought on by these therapies? They die, because if done at times where they have difficulty processing information, cognitive input can put them into extreme relapse. Yes, it actually progresses the disease. They die because they think graded exercise is beneficial. In reality, exercise in many cases can lead to further damages to their body and a downward progression of the disease. Yes, pacing is a good thing, and that is what ME/CFS patients should do….on their own terms.

Blaming stress and depression instead of looking for a legit biomedical explanation of this disease seems to be another easy way out for the CDC. It’s highly unlikely ENTIRE outbreaks have been caused by stress and depression. Entire towns just suddenly get ME/CFS because there stressed and depressed. Truth is, due to abnormalities in the nervous system brought on by this disease, stress or depression can cause disease progression, just as with most other diseases.

You’ve been listening to patient testimony for years, If you really thought this is a serious issue, why do most doctors still have no idea what CFS is, and many have never heard of ME.

Why have government funds for the study of this disease dwindled over recent years?

Why is this disease not taken serious by our researchers?

Why do our peers not take this disease seriously?

Why hasn’t the name chronic fatigue syndrome been changed, to accurately reflect the nature of this disease?

Why does the U.S have the most watered down definition of Chronic Fatigue Syndrome?

Why are there no facilities equipped to take care of severely ill ME/CFS patients?

Why are patients not covered by insurance when they seek the help of alternative minded doctors, when these doctors are the ones saving the lives of ME/CFS patients?

These issues still remain, because they solely reflect what you are NOT doing for our community.

I nearly lost my life, and many others are suffering and will die prematurely, if we all don’t step up, and do the right thing.

It’s time for a New Day to begin.”

Bravo Mike, keep up the great work speaking out for those who are unable.

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Comments

  • Faith

    November 8, 2009 at 4:46 pm

    What an incredibly brave man.
    Thankfully he became well to tell his story to Washington.
    I pray they were really listening.
    Thankyou
    Faith

  • earthwalker

    November 8, 2009 at 10:24 pm

    Yes, I hope they were listening!!

  • commonsense

    November 10, 2009 at 12:34 am

    Dessin is a fake. His story is a total hoax. Please, is there any scientific truth to it?

    No, it’s ludicrous.

    Watch for more info about how he was able to lie in front of the CFSAC.

  • Michael Dessin

    November 14, 2009 at 4:43 pm

    The same few folks always bash the credibility of anyone who has recovered. You do a major injustice for all ME sufferers. As seldom as it happens, we can learn a lot from those who have recovered.

    Thank You for posting my story on planet thrive, I want folks to know there is hope.

  • earthwalker

    November 14, 2009 at 6:07 pm

    Mike, thanks so much for visiting our site. You are a huge inspiration to so many. Most importantly, you got your life back. I never doubted your story once and I know many others who feel the same. It sure is depressing to get all the naysayers leaving comments on all the articles here, but I guess it goes with the territory. In the end it is they who suffer…their closemindedness will prevent them from finding their path of recovery unless it comes from a bottle with the letters Rx written on it…big sigh.

    But look how many views this article got – 825 as of today. People ARE listening.

  • Julie Laffifn

    November 14, 2009 at 7:47 pm

    I want to thank Mike for sharing his story and Planet Thrive for publishing here for members. I found it incredibly hopeful. Is there a place where we can learn more about the treatment?
    best wishes, jules8

  • Michael Dessin

    November 14, 2009 at 8:29 pm

    Hey Julie, there is a very good piece on neural therapy on this site! Just go to the treatments section.

    There are a number of agents that can be used with neural therapy, from Bee venom, homeopathics, anesthesics and more.

    It is very difficult finding a physician in the U.S. who do this therapy for neuro-immune disease. Most just do it for pain and cosmetic purpose.

    Hoepfully as this therapy catches on in the U.S. more doctors will be willing to go this route.

    Mike

  • Julie Laffifn

    November 17, 2009 at 4:12 pm

    Hi Mike, thanks for replying to my question. I heard your doctor is not taking patients but if you ever hear that this changes, I would love to know about it. I live in IL and Ohio is not so far for me to travel. I’ve gone to TX and SC for treatment. Not easy, but not impossible either! I have severe MCS and many, many neuro problems but not the debilitating fatigue except occasionally gratefully. Am just sooooooo reactive to everything and very neurologically impaired from exposures.
    warm wishes, julie

  • Michael Dessin

    November 18, 2009 at 10:09 pm

    Absolutely Julie, stay strong :)

  • jess marotta-porter

    November 28, 2009 at 6:25 pm

    thank you mike,it takes great courage to speak publicaly like that,and i for one think its time for some major changes in the cdc,im hopeful about the new discoveries by the whittemore peterson institute,i hope your treatments are studied as well,as they clearly worked for you

  • jess marotta-porter

    November 28, 2009 at 6:28 pm

    thank you for having the bravery to speak up for us[we are not all as sick as you were,thank god,but i believe most of us lead decievingly limited lives.Others do not know what its like,unless they have it to [cross between ms and aids does sound right to me]im hopeful though,thank you

  • jess marotta-porter

    November 28, 2009 at 6:32 pm

    i find it hard to believe youd lie{i believe you as i know how wierd this illness is] why would anyone lie abt this?the only thing hard for me to believe is that you are 100% cured.[though i hope so]

  • earthwalker

    November 29, 2009 at 1:35 am

    Thanks for your comments Jess. I don’t think Mike has ever claimed to be 100% cured. He has improved considerably from his near-death condition last year, but still has some neuro symptoms and is continuing treatment so he can recover as much as possible what he lost. Hopefully he will respond here himself and let you know his recovery status.

  • Michael Dessin

    December 14, 2009 at 10:35 pm

    Just saw the above comments…I’m not 100% by any means but considerably better. Some days I do function near 100%, others 85% or so.

    Reversing this disease process is one thing, than healing damage done, needs to take place.

    This disease is extremely complex and requires a multi-modality approach. There will never be a pill that cures this horrific disease, although I know people would obviously like that.

  • Superman

    January 10, 2010 at 12:36 pm

    I dont understand how this treatment can help someone with so many long term active infections. Goldstein also used it for many many years in his patients, instead of procaine he used ketamine which is also a sodium channel blocker and NMDA receptor antagonist, but he never really explained how this may affect immune function or how his patients may possibly improve with such an immune system damage from multiple viruses

  • Peter Anastasia

    January 19, 2010 at 12:12 pm

    The individual known as “commonsense” sounds EXACTLY like an insurance company rep or lobbyist. These folks are TERRIFIED that myalgic encephalomyelitis ( ME ) gets the medical and scientific recognition it warrants due to the gravity of its severe nature like Mike alludes to in his testimony. Politicians are in the pockets of the insurance companies. As Mike stated, ME was given the lame, silly and condescending name of CFS to trivialize it in the public’s eye so no one would take it seriously. No legitimate disease gets named after a vague symptom such as “fatigue” which is found in just about any illness to varying degrees. The neurological dysfunction of ME is completely downplayed. This is because to take this disease seriously, it would require a mandate on Congress by the public to research and find effective treatments. Congress by nature of the 2 party system, is lazy and inefficient but more importantly bought off by the insurance industry which is a multi-billion dollar money mill based on depriving patients of care. Imagine the insurance pay-outs the insurance companies would be forced to pay for health and disability benefits! This would definitely affect their bottom line, profits and the satisfaction of the stock share holders. The health care industry is a ruthless, profit driven monopoly and juggernaut bent on giving its CEO’s gigantic bonuses and reaping huge profits for stock holders. It has nothing to do with compassion. Corporations actually form the etiology of fascism. Corporatism is synonymous with fascism by its very definition. The person aka “commonsense” is obviously aware of this fact and thus his derisive attack on Mike. As a former medical professional with ME, I could see no holes in Mike’s story. It was fully credible complete with photographic evidence. Well done!
    On a more positive note, I would like to ask Mike who specifically was the Ohio doctor that practices this form of neural therapy for those of us that might benefit from his treatments? I have been disabled with ME for 14 years and am frankly fed up with the lack of effective treatments. Do you know if he might have trained by Dr. Dietrich Klinghardt, the German physician that popularized neural therapy in America and trains other health care practitioners? Dr Klinghardt’s web site is: http://www.neuraltherapy.com/ . He is located in the Seattle area but is rather pricey for some of us on SSDI and I am not sure of what successful results he gets with CFS/ME patients.
    Thanks, Mike, for your contribution to the ME community.
    I grateful that you successfully recovered your health and act as an advocate for those of us less fortunate. Hopefully, the day arrives soon that ME is no more than a distant memory like small pox or leprosy.

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