It is my belief that we, collectively, have to look more closely at the most severely ill ME patients. It is my belief that they harbor, in their severity, the keys to this illness. Most doctors do not see the most severely ill. Kenny De Meirleir, in his trips into Norwegian homes, treats the very ill. Paul Cheney and David Bell also have occasionally seen the severely ill. Perhaps others have - and hats off to them. But by and large, this patient population is isolated from everyone. The severely ill ME patients cannot get to a doctor's office. They languish in darkened rooms, cut off from reality, isolated and often abandoned, without medical care. It seems that no one cares a whit about them. It is these patients on whom we have to focus our attention, both for their sake and for ours. More effort has to be made to "get close to them", although this, in itself, is difficult, under even the best of circumstances.
I know of a number of these patients. I am interested in identifying more of them. Mostly they have the willingness to participate, through testing, in their own betterment - provided that the severity of their situation is taken into consideration. Many already have had testing for immune function, NK cell activity, cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent testing needs to be applied to these patients using existing parameters - if only to set the stage for future possibilities that will soon arise.
Peter Cairns, whose own sister is ill, has made this film. Peter has both the skill and the ability, born of experience and empathy, to approach these patients, to get close to them without disturbing them too much - for these patients live in a very fragile and vulnerable world.
Most people do not want to take a look in this direction. Most people turn away, including doctors. It is time to toughen up - and to consider these patients, and what they are going through, especially since they might hold the key. Testing of the half-sick (no disrespect here) has not brought clarity. We need to brace up, take a good look and then move in close. While it is difficult it is the only decent and humane thing to do.
This video interview of Dr. David Bell was made in August 2010 at the opening of the Whittemore Peterson Institute building on the Reno, NV campus. The video was a private project.
It occurs to me to add this fine, very moving testimony of Laurel from 2009.
Most that I know are severely ill for the first ten to twelve years and then seem to become "half sick.". Knowing why this occurs should be of more interest than anyone seems to have.
ReplyDeleteJana Jagoe
Special thanks to Peter Cairns, who understand that "these patients live in a very fragile and vulnerable world."
ReplyDeleteI agree completely with Chris Cairns when he writes, "that we, collectively, have to look more closely at the most severely ill ME patients. It is my belief that they harbor, in their severity, the keys to this illness."
I am often distressed when someone who is "half-sick" reports that s/he is included in a study. As Chris writes, "Testing of the half-sick (no disrespect here) has not brought clarity." The young man in the video--HE should be studied!
Flo
Thank you. I hadn't seen this interview with Dr. David Bell. He speaks with such lucidity and ease. I greatly miss his newsletters, too.
ReplyDeleteThanks chris
ReplyDeletei have very severe ME..flat in bed for all but a few minutes six or seven times a day, with all the ghastly symptoms. at present i can use computer assistance to communicate, and to divert myself occasionally with some music and audio books. i rarely see a doctor, but contact my neurologist or internal med person when absolutely necessary. very few of my doctors over the thirty years i have been so ill have known anything at all about ME, with which i was diagnosed by doctors who had actually seen ME patients in epidemics, most treat me as viral encephalitis..
i would be willing to contribute whatever i can, as a person with very severe ME, to promote the scientific reality of ME
ReplyDeleteAnd many with ME, not cfs, do progressively fail to recover to each of our previous levels of ability..like falling downstairs and progressively being able to climb back fewer and fewer stairs until you stay on the bottom and die..the extremely severe cases..
ReplyDeleteAs I said in my November, 2011, testimony at CFSAC the lack of medical care for severely ill, housebound ME patients is a national disgrace. We need to both study these patients to learn about the disease from them and develop a system to take care of them. This can be done. Why isn't it happening? Why was there no recommendation by CFSAC to develop a network of home care providers who are knowledgeable about the care of patients with severe ME? Why are there no projects at NIH or CDC to study them?
ReplyDeleteJoan Grobstein, M.D.
Outstanding impact video. Painful to watch. And necessary.
ReplyDeletePowerful video. I agree that severe patients are ignored, they are not part of the usual conversation, even among the ME specialists and advocacy groups, and they absolutely, critically must be. When the young man in the video talked about wanting to be able to take a shower or go down the stairs, I understood for the first time how huge the difference is between not being able to do self-care and at least being able to do a minimum level of things, even if mostly housebound. When I recently had a setback where I could just barely take a shower on my own, I almost felt like I had acquired a different disease; I was actually relieved when I improved enough to be able to do enough to feel PEM again. Something needs to be done to turn attention to severe patients.
ReplyDeleteYes, there should be home care, home medical care and assistance with basic tasks.
ReplyDeleteHowever, the federal government is now contesting much home health care paid for by Medicare. People are going to court to fight for health care, visiting nurses, physical therapists and aides to see them in their homes.
The government is allowing only short periods of home care, and if the person does not improve in that time period, they are cutting off care. They say the standard is that if someone is not improving from the care (and within a short time), then cut it off.
In other words, the government does not want to fund the care which would maintain people at their current levels of health or to prevent further deterioration.
It's terrible but that's what is happening.
Great video! Thanks to Chris and Dr. Bell!
ReplyDeletehow to find those of us with very severe ME: the british have the 25 percent group, and the hummingbirds foundation for ME has two support groups, one of which is for those with severe ME, the other for the majority who are not so sick. Dr Speedy has a blog which many of us can access at http://niceguidelines.blogspot.com/, and Dr Greensmith has http://mecommunitytrust.org/
ReplyDeletehttp://www.25megroup.org/
ReplyDeleteOsler's Web: Inside the Labyrinth of The Chronic Fatigue Syndrome Epidemic
ReplyDeleteby Hillary Johnson
Crown Publishers, Inc.
"In 1985 in Incline Village on Lake Tahoe, Nevada, two physicians began noticing an unusually devastating illness with an array of symptoms never seen before.
Puzzlement at the first few cases turned into alarm when more and more patients staggered in with the same debilitating symptoms. Called variously the Lake Tahoe Disease, Chronic Epstein-Barr virus syndrome, Yuppie Flu, and finally Chronic Fatigue Syndrome, this new illness was also being noticed in Brigham and Women's Hospital in Boston, in various hospitals in Los Angeles and San Francisco, and in small towns in upstate New York as well as at other points around the United States., The majority of early cases reported in the press afflicted middle-class middle-aged women. Unable to find any one cause for this bewildering array of symptoms, the medical establishment attempted to convince these women that it was all in their heads."
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Regardless of what others called this strange phenomenon, a few of us "stagger-ers" found a peculiar way to help ourselves.
It is very odd that nobody cared to find out a thing about it. Even more that patients who appeared to have the same thing actually fought to make our strategy unimportant.
I still can't understand why anyone would do this.
If anyone understands why people who say they are looking for clues would vehemently attempt to suppress them instead, please explain this odd behavior to me.
Why are you doing this?
ReplyDeleteOk, it's been over a quarter century.
ReplyDeleteI GET IT. "CFS researchers" have hijacked the paradigm so completely away from its origins that "CFS researchers" are NEVER going to look back at this incident.
I don't EVER want to hear any more ridiculous quotes about how doctors say they "Listen to the patient like Osler". That's OUT, over, done... TOO LATE.
If they were going to act like Osler, they would have done it already, not behave exactly the opposite.
Wow, good video. I feel for you and others in much worst situations than I. The CDC does need to step up its game in finding the root cause of this disease. I, too, came down with mono (22 yr. old) and haven't felt the same since. It has only been 2 yrs for me, but the fatigue and pain still lingers. I have found some relief in removing all toxins from my body and environment. There is much to be learned when it comes to hidden toxins. See my blog, which sheds light on these toxins and my path of recovery. I hope you begin feeling better.
ReplyDeleteIt's really nice Video you have shared. I really felt what the situation that was.
ReplyDelete---------------------------------------
- Chronic Fatigue Symptoms
It is very Great video!
ReplyDeletePrivate transfers Cairns