Doctors, drugs slowly coming around to chronic fatigue (sic)

[Ember]

By Erin Allday
Published 4:39 pm, Tuesday, March 25, 2014

In a conference room at San Francisco's Parc 55 Hotel, a hundred or so people, most of them patients with chronic fatigue syndrome, were listening to a panel of doctors talk about treatment options.

Eventually, panelists would talk about the potential of antiviral and immune-modulator drugs....

More...

 

[Firestormm]

"We have no known cause, no cure," Lapp told the crowd. "I feel patients do best when they accept the illness - when they accept that they're a new person, with new energy levels and new limitations."

There were a few nods around the room, but not much reaction otherwise. One woman lay sprawled across two chairs, her eyes closed. Another propped her feet on a chair and rested her head against a wall...

"If you could offer up any treatment, at least to a subset of patients, that would be so helpful. Even if you could help somebody just 20 percent, give them a little bit more energy, that would be huge," said Susan Kreutzer, a Danville woman with chronic fatigue syndrome who has gone to Washington, D.C., multiple times to request more funding for research.

For the most part, what's worked for her are coping strategies - or as Dr. Charles Lapp said at the meeting last week, learning ways to live with her illness.

"I have to pace myself. I have to rest a lot," Kreutzer said. "My friends would say I'm doing much better these days. But I still have a lot of the cognitive problems when I'm tired.

"You wouldn't want to put me in charge of anything," she said with a laugh.

 

[Ember]

Here are Susan's comments:

I believe the quotes that are attributed to me in this article leave out at a crucial point as to why I have experienced some improvement in my ME/CFS symptoms and it would be inaccurate for anyone to be left with the impression that this was due to “pacing” or that I have somehow rolled over and accepted this illness.

Like so many patients, I have spent years trying to uncover what had caused my health to deteriorate after experiencing a bad case of upper respiratory flu like symptoms. It was not until I found an infectious disease doctor knowledgeable about this illness that I received an accurate diagnosis. It was also following this diagnosis that I received anti-viral treatment that for the first time provided me with noticeable improvement in my symptoms (such as throbbing muscle pain, searing sore throat pain, migraine headaches, swollen lymph nodes, cognitive impairment in speech, memory and motor processing, light and sound hypersensitivity, gastrointestinal upset and extreme fatigue that is so unrelenting and intense that it feels like the worst case of the flu that you have ever experienced).

Unfortunately, I was not able to sustain the same level of improvement that I first experienced on anti-viral treatment, but the fact that I have not returned to spending every day tethered to my bed has given me and those around me great hope that someday I may find my way back to a more normal life. In the meantime, I do try to pace myself to be able to have a few precious hours each week to let the world know that I am still alive and kicking. It is my hope that a second course of anti-viral treatment and/or other immunomodulator treatment will bring me closer to finding a path to remission from this illness.

Susan Kreutzer (mecfsneid@gmail.com)

I also felt it was important for me to comment on this article, so that others whether suffering from this illness or just learning about it would understand that it is a very real illness that results in a cascade of symptoms affecting multiple organ systems in your body. Because this is a complex illness, the public and even many in the medical profession are not knowledgeable about ME/CFS and do not realize that right here in the Bay Area there are well qualified and reputable physicians and researchers who are studying and treating this illness. Two of the top ME/CFS experts in this field are located in the heart of Silicon Valley - Dr. Andreas Kogelnik (Infectious Disease) in Mt. View, CA and Dr. Jose Montoya (Infectious Disease) in Palo Alto, CA. (See, http://openmedicineinstitute.org/ and http://chronicfatigue.stanford.edu/)

This is a solvable illness, but due to a long history of political maneuvering both within and outside of government, the real truth about this illness has been buried for years and funding has almost been nonexistent for an illness that conservatively affects over 17 million people. A long time Washington D.C. journalist, Llewellyn King, stated at a recent Press Conference that what is needed for this illness is to “comfort the patients, educate the doctors and to shame the government“ into action. (See,

).

I pray every day that someone in Congress or here in Silicon Valley will step up and be a hero for this illness and help us solve this mystery before we allow another generation to be struck down by ME/CFS and be hidden away in plain sight.

Susan Kreutzer (mecfsneid@gmail.com)

 

[Sparrowhawk]

"We have no known cause, no cure," Lapp told the crowd. "I feel patients do best when they accept the illness - when they accept that they're a new person, with new energy levels and new limitations."

Yech! Really??? How about more research and a cure, thanks very much...