I hear from people who have managed to get off the floor. For those who do not, we may never hear from them again.

When I talk to people, I can offer ideas, I can just listen to them, but most of the time, I cannot do a thing to help. AND I always hope they choose the light…make a choice to live, but I have no control of outcomes.

The number of abused women is high, too. They stay, horribly ill because they cannot take care of themselves. At least the abuser may buy food? Wash a load of clothes? Fix a toilet?

We are 3 generations into this illness….I think finally there is some movement by people who have support to speak for those who don’t. I am encouraged, but I am also comfy and not alone. PLEASE YA’LL take care.

Peggy Munson
I wanted to respond to Emily’s comment above.

Emily, if you read my blog, you will see that I was infected with life-threatening secondary infections in the years before I was left to die like garbage on a bathroom floor (and in the corner of my bedroom), and these significantly contributed to my decline (and aggressive treatments for these and other treatments contributed to why I lived). I also feel it is possible that I picked up another infection in the hospital, but don’t know: all I know is that my tests showed signs that I was in septic shock, among other things, when I was dying (911 paramedics had done EKGs at my house). Judy Mikovitz, Dr. Martin Lerner, and other prominent ME/CFS people have found that secondary infections are common in XMRV/ME/CFS, as they are in AIDS. In some cases, like mine, these lead to rapid decompensation and death, and death from septic shock usually results from respiratory failure and results in long-term cognitive and other problems, as I have had. In the Incline Village years of ME/CFS, Dr. Cheney testified that he had cases of an HIV-negative, AIDS-like illness in which secondary infections leading to death occurred.

The only way I survived was by staying perfectly still on the bathroom floor (or in bed a few feet away, when I was there at night), unmoving, as any movement would leave me heaving for breath, blacking out, losing consciousness, or seizuring. Bathing myself with baby wipes every few days as I described left me in a terrifying state of respiratory distress, and had to be done while lying as flat as possible in the same position I stayed in all day, and quickly wiping down a part of my body. I could not crawl to my closet across the room or crawl to my bedroom door: I was heaving and choking/gasping for breath and blacking out from the tiniest motion. As hard as it is to believe, just reaching in any direction was so life-threatening that I spent all day just crammed in that narrow bathroom, with everything I needed by my side or beside my bed. I can’t explain why I didn’t die from lack of hygiene — I could rarely brush my teeth, could not turn over to prevent bedsores (and spent all day every day lying on towels on a bathroom floor), could not take a bath, could not wash my hair. A few times, I managed to plunge the toilet that was right next to me when it clogged, but I barely survived this — the exertion, that is, and had to do it in bursts. I didn’t include these graphic details or many other minor details because this was a short piece. For example, I did have clean laundry, it was just almost impossible to change my clothes due to the exertion — but the small amount of help I did have managed to wash one load every few weeks and put the clean clothes by the bathroom door when dropping off my food, so I could carefully and quickly grab something from the basket when crawling from my bed to the bathroom floor. I changed so rarely that there was very little laundry, and the sheets on my bed were never washed that whole time, to my recollection. There were ants everywhere as it started to warm up, crawling on me and the ceilings and walls, but they were more friends than enemies — they didn’t bite me, didn’t cause more disease.

There is no way it was possible for me to survive what I did, honestly — I figured I would not wake up any of the days I did, and it was a miracle I did — and everyone involved in helping me was pretty much one hundred percent sure I would die any day. I didn’t due to my enormous fight, a lot of interventions, staying still as I mentioned, some people fighting for my life, and some luck (which I put in to express that anyone who does die from this illness is certainly not without fight, attempts to heal, etc., as I know Sophia Mirza and others who have not survived were true warriors). I also used tons of supplements and ultimately got injectible antibiotics, a ventilator, and other treatments that saved my life. I am still very sick two years later, and very very impaired and physically injured from what I went through, but the treatments I did helped pull me out to some degree. It’s unlikely I’ll ever recover to even my previously poor state of health.

Your disbelief surely comes from never having studied the cases of the sickest patients, such as Sophia Mirza, whose mother has provided extensive documentation of her illness online. She died the way I was dying — and the main reason I lived and she died is probably that I could still ingest foods whereas her food sensitivities left her unable to do so and this additionally weakened her. Sophia, unlike me, had extraordinary care in the form of her mother Criona and other assistance Criona enlisted. But they had to battle a sick culture as Sophia fought this terrible illness.

As for Mike Dessin, I encourage you to get to know more about him before passing such judgments. He has done a great deal for our community, and it is a true shame that people like you discourage people like Mike — who have valid things to offer us — from speaking out. Mike is someone I also know and fully believe. I have also read extensively about his treatment and understand why it makes theoretical sense.

While I respect your right to an opinion, I actually do think your tone is insulting to those of us who have been in these depths, and it’s why I have not spoken up more in more venues about the horrors I went through. I’m still dealing with significant trauma and physical injury and still fighting to recover, and like any patient prefer to seek out positive things and support. It was very hard for me to tell this story, but I felt it was necessary.

My family, like you, simply refuses to believe what happened, even though witnesses have written them letters recounting the factual events I described above, and many people begged them not to let me die as I was dying, including at least one health care provider who told them clearly I WAS dying and they MUST care for me.

Just because you are one of the fortunate “CFS” patients who has not been to these depths, you should not presume to understand this illness at its worst (and ME/CFS does not really resemble MCS at all — some of us are simply unlucky enough to have both illnesses). I used to be like you. I was much less sick in the early years of illness, and could never have imaged it could get this bad. It was only due to bad luck and lack of care that it did. I suggest you read some of the stories at the 25 ME Group website if you want to see other examples of patients who are as sick as me or Mike. As you said yourself, your condition may also have been wrongly diagnosed, a result of doctors not doing proper investigation. It may be that if you took tests I have had extreme abnormalities on (i.e. mitochondrial testing, impedance cardiology testing for diastolic dysfunction, tilt table testing for dysautonomia, pathogen testing, etc.) you might find you actually do have a different illness, and maybe one more treatable — I’m suggesting this as I agree with Debra that the right stones are not always turned over, and having a treatable condition (or even treatable pieces, like the secondary infections I had), can lead to a positive outcome, which I wish for for all of us.

I have known other patients who were very close to death as I have been, but none at that level who were as lacking in adequate or personalized care, and that has been the biggest threat to my survival. It may be hard to believe that such callousness exists, but if you do consider the statistics of New Orleans/Katrina (that half who died were 75 or older), it might become clear that abandoning the sick, frail, and weak is a major part of our culture. It’s pathological, but it’s easy for people to rationalize it or get away with it. I heard newscasters post-Katrina trying to blame the elderly for not escaping, saying they were stubborn, set in their ways, etc. There was no analysis of the fact that some people could not walk or crawl or swim or drive or run away.

Thanks so much to everyone for the supportive and kind words as well.

Peace,
Peggy

from a car by myself. Since my family denied me any help and my partner I dragged myself into Queensland health. They also refused me any help. So believe it. People arent interested in sick people. I cant make them any money anymore like I used to so… bad luck for me. I must have been really evil in my last life.

I have CFS (although that diagnosis could be due to sloppy doctors who are too lazy to put effort into investigating a patient’s puzzling condition). I am quite a bit better now, however, for many years I was very unwell and without support from family and friends. However, even at my very worst I was a relative ‘picture of health’ in comparison to Peggy’s description of her condition.

My point:
Even though I should be able to comprehend and empathize with this story I find it literally unbelievable.
My comment will probably be roundly condemned, but if someone who ought to be able to believe and empathize has this reaction, I can’t begin to imagine what reaction others, who are far removed from the reality of life with a chronic and debilitating condition, have.

The facts seem to beggar belief.
(Rather than wade back through the missive looking for exact quotes I’ll rely on my (bad) memory of the details that I read, because that’s what other readers will do as they reflect on the story.)

Alone, with barely enough energy even to turn over in bed, can crawl to bathroom only to collapse on floor etc.
No one helps, so presumably no food is available, no clothes get washed etc.
I just don’t get how a person that sick didn’t die (from starvation or thirst or poor hygiene etc.).
This situation seems to have gone on for several years.

I’m sorry, but for this reader something about the telling of this woman’s harrowing experience of a dreadful medical condition has me unsure what to think. Does she have a too vivid imagination, is her condition psychosomatic … ?

I’m not disbelieving that Peggy is dreadfully unwell.
It’s the story I grapple with.