https://static1.squarespace.com/static/54059cd8e4b09fa759f4c83f/t/5416a202e4b00f3a4f0de025/1410769410474/Killing Us Softly 1.3.pdf
20 years ago a doc put information in a free book that I found just this year... he worked with cfs mcs patients years ago and found many thing other doctors have not sorted
my quote from his free book... quote made in another thread..
"I thank those people who have sought my help over the past decade for their health problems related to adverse effects of low dose chemicals on their health. The education provided to me by those brave, ignored, persistent, infuriating and inspiring people and their carers over thousands of hours has been a privilege. I have provided the time and the ears, while they have enlightened me with the stories which, taken together, have given me and my colleagues a unique insight into medicine, our society, and the resourcefulness of those people who suffer most in the name of progress. To those people I owe my deepest gratitude.
The story of multiple chemical sensitivities is a difficult one to set in a social context at present. The understanding is emerging, and the data which seemed to be lacking in the past are now flooding in. I will be satisfied if, after reading my contribution, a reader has his or her faith in regulatory bodies, manufacturers and medicine shaken. Growing up is often a painful experience in which blind faith must be discarded, and in which we seek the truth for ourselves. The truth, for me, is the people who see me and relate their all too similar stories day after day. It is not theory, experts, authorities of newspaper stories.
I urge and invite you all to lose your faith, and grow your own knowledge and understanding. Believe nothing I or others say without testing it against your experience. Then, do not doubt the truth you find, no matter what the “experts” say. Dr Mark Donohoe 2004
I know it is mostly about mcs but here he ties in cfs....
"Observations from an MCS watcher Dr Fluhrer, Dr Dobie and I opened the Special Environment Allergy Clinic in part to observe and record the health consequences of low level chronic exposure to toxic agents, and in part to see how we could help those people recover. It was a decision which would change my mind, my practice, and my professional life forever. In the clinic, we noted many things. Some were small things, like the tendency for our clinic patients to have a temperature about half a degree lower than those in the rest of the hospital. Some were big things, like major disorders of respiration during sleep, and mild brain damage. Some fascinated us, such as the tendency of toxic and chemically sensitive patients to develop evidence of liver damage after two days of a fast (we called this our “liver stress test”, though it was never popular for either patients or doctors.
The problem was eliminated by supplementing nonallergenic amino acid supplements during the fast). Above all, though, I recall two remarkable properties which bound the multiple chemical sensitivities patients in my mind. The first was the utter consistency of symptoms, the most important of which appeared to be neurological in origin. The second was that while their pathology and other tests were consistently abnormal, there was a remarkable inconsistency from patient to patient when we looked at the types, magnitude and direction of pathological alterations.
Symptoms and signs To my mind, there are a number of important and interesting factors which distinguish multiple chemical sensitivities clinically from anything I had seen before in my training. Firstly, there is a massive crossover between multiple chemical sensitivities and chronic fatigue syndrome in terms of symptoms and disability. I personally believe that they are different aspects of a single group of illnesses. My rule of thumb was simply that, if the person’s primary complaint was apparently triggered by chemical exposure, and heightened sensitivity to the effects of chemicals was a major, early onset and obvious component, the best description was multiple chemical sensitivities. Otherwise, chronic fatigue syndrome was the common diagnosis."
this is from same page from old bones...
a bit more to wet your appetite...
↑
I was just reading a free online book before I looked at this post...take a look at the contrast...
https://static1.squarespace.com/static/54059cd8e4b09fa759f4c83f/t/5416a202e4b00f3a4f0de025/1410769410474/Killing Us Softly 1.3.pdf
it was the tone ... of the two different treatment places that jarred me... one seems humain the other does not...
Thanks, @@btdt , for providing the link to the article by Doctor Mark Donohoe. In addition to the respect and trust expressed towards patients regarding their lived experience with multiple chemical sensitivity (and also what he referred to as chronic fatigue syndrome), some of the content shows an understanding of these conditions that is quite remarkable, especially considering the article was written approximately 20 years ago. Here are a few excerpts:
"These tests, in total, suggested two things to me. Well, three things really. Firstly, we were not dealing with an homogenous, single disease entity. More likely, these people represented a group of disorders with common symptomatology, much as we had found in the closely related chronic fatigue syndrome.
Secondly, if one were not careful to divide this group up into appropriate sub-groups with common defining characteristics, the statistical assessment of the group would . . . fail to find real differences between these people and the “normal” population.
Thirdly, and for me most importantly, it suggested that we were finding stable states of health (or ill health) which were not subject to homoeostasis, or a return to “normal” function, any longer. I say this because the peculiarly individual “abnormalities” remained surprisingly constant over months or years, and had all the hallmarks of a stable adapted response. Whatever the original injury and damage, the expected recovery did not happen. . . . The temperature lowered into a state of mild hibernation, minimising physical demands of a system under stress. The person was not well, but was not as ill as they may otherwise have been. More importantly, they were not about to “recover” if recovery increased damage and shortened life."
"I learned that day that explanations based on indefinable (and essentially unprovable) psychological explanations are frequently our first answer, but are rarely our best."
"Specialists spend much of their time either squeezing hexagonal pegs into round holes, or finding no problems where clearly problems exist. Both these approaches cause immense problems for those with novel, challenging or emerging illnesses. In the “hexagonal peg” scenario, the problem is reduced to one which fits with the specialist’s training or interest. Failing to see the bloody obvious is less dangerous, unless the specialist is to give a report to a lawyer or insurer! Each approach can lead to gross errors, occasionally flirting with scientific fraud."
"Where causes are not easily found, we invent causes. . . . They need to make the majority of us comfortable that the causes do not apply to us. We need . . . a type of rubbish bin for medicine, where we dump the conditions and people who we either do not understand, or who make us uncomfortable. Psychology and psychiatry will do for now. These are pernicious bastard children of medicine. Ever ready with an explanation which fits the needs of the medical model, there is no escape for the people trapped in their prejudices."
I could continue quoting this excellent article, with content suitable for various threads. For example, the intervention of government and police in cases of parents trying to protect a child from the harm of chemical exposure -- similar to the recent BBC radio segment on parents of children with ME. I haven't finished yet, but consider the article well worth reading.
Most important may be that this doctor is still in business if he were in my country I would be seeing him already....
and he said he would do a follow up book maybe free maybe not as he did not say.... if the interest was there.
here
"With special thanks and gratitude, I dedicate this book to my friend and intellectual playmate, William Vayda, who died in early 1997. William was a man ignored by medical practitioners and science, much to medicine's shame. He remains the most effective healer I have ever met, a man capable of integrating the most diverse and apparently unconnected information for the benefit of his patients. I miss his companionship and his challenges greatly This is a book commenced, but never completed, in 1995 and 1996. It was “completed” of sorts around mid 1998. I have made only minor changes since then, and so I now pass it out to the community as a summary of the views and opinions I formed from the many years of wonderful education provided to me by my chemically injured patients. Like all would-be authors, I am always planning other books, and the next update. This one is for free, under Creative Commons, for passing on to anyone who may have an interest in its subject. The only restrictions are: 1. It be passed on without charge of any type (i.e. for free), and 2. It be passed on with attribution to me and a link to my download page http://web.mac.com/doctormark/DoctorMark/KUS.html
There is no charge, and no hidden agenda. I am simply keen to know the number of people interested enough to download it. As well, I’ll leave a feedback email button at the bottom for use by down-loaders. Your feedback will help me decide whether to rewrite, update or correct the book, and whether or not to print it. In ink. On paper. I am more than open to feedback & correction. Please email
drmark@bigpond.net.au
20 years ago a doc put information in a free book that I found just this year... he worked with cfs mcs patients years ago and found many thing other doctors have not sorted
my quote from his free book... quote made in another thread..
"I thank those people who have sought my help over the past decade for their health problems related to adverse effects of low dose chemicals on their health. The education provided to me by those brave, ignored, persistent, infuriating and inspiring people and their carers over thousands of hours has been a privilege. I have provided the time and the ears, while they have enlightened me with the stories which, taken together, have given me and my colleagues a unique insight into medicine, our society, and the resourcefulness of those people who suffer most in the name of progress. To those people I owe my deepest gratitude.
The story of multiple chemical sensitivities is a difficult one to set in a social context at present. The understanding is emerging, and the data which seemed to be lacking in the past are now flooding in. I will be satisfied if, after reading my contribution, a reader has his or her faith in regulatory bodies, manufacturers and medicine shaken. Growing up is often a painful experience in which blind faith must be discarded, and in which we seek the truth for ourselves. The truth, for me, is the people who see me and relate their all too similar stories day after day. It is not theory, experts, authorities of newspaper stories.
I urge and invite you all to lose your faith, and grow your own knowledge and understanding. Believe nothing I or others say without testing it against your experience. Then, do not doubt the truth you find, no matter what the “experts” say. Dr Mark Donohoe 2004
I know it is mostly about mcs but here he ties in cfs....
"Observations from an MCS watcher Dr Fluhrer, Dr Dobie and I opened the Special Environment Allergy Clinic in part to observe and record the health consequences of low level chronic exposure to toxic agents, and in part to see how we could help those people recover. It was a decision which would change my mind, my practice, and my professional life forever. In the clinic, we noted many things. Some were small things, like the tendency for our clinic patients to have a temperature about half a degree lower than those in the rest of the hospital. Some were big things, like major disorders of respiration during sleep, and mild brain damage. Some fascinated us, such as the tendency of toxic and chemically sensitive patients to develop evidence of liver damage after two days of a fast (we called this our “liver stress test”, though it was never popular for either patients or doctors.
The problem was eliminated by supplementing nonallergenic amino acid supplements during the fast). Above all, though, I recall two remarkable properties which bound the multiple chemical sensitivities patients in my mind. The first was the utter consistency of symptoms, the most important of which appeared to be neurological in origin. The second was that while their pathology and other tests were consistently abnormal, there was a remarkable inconsistency from patient to patient when we looked at the types, magnitude and direction of pathological alterations.
Symptoms and signs To my mind, there are a number of important and interesting factors which distinguish multiple chemical sensitivities clinically from anything I had seen before in my training. Firstly, there is a massive crossover between multiple chemical sensitivities and chronic fatigue syndrome in terms of symptoms and disability. I personally believe that they are different aspects of a single group of illnesses. My rule of thumb was simply that, if the person’s primary complaint was apparently triggered by chemical exposure, and heightened sensitivity to the effects of chemicals was a major, early onset and obvious component, the best description was multiple chemical sensitivities. Otherwise, chronic fatigue syndrome was the common diagnosis."
this is from same page from old bones...
a bit more to wet your appetite...
↑
I was just reading a free online book before I looked at this post...take a look at the contrast...
https://static1.squarespace.com/static/54059cd8e4b09fa759f4c83f/t/5416a202e4b00f3a4f0de025/1410769410474/Killing Us Softly 1.3.pdf
it was the tone ... of the two different treatment places that jarred me... one seems humain the other does not...
Thanks, @@btdt , for providing the link to the article by Doctor Mark Donohoe. In addition to the respect and trust expressed towards patients regarding their lived experience with multiple chemical sensitivity (and also what he referred to as chronic fatigue syndrome), some of the content shows an understanding of these conditions that is quite remarkable, especially considering the article was written approximately 20 years ago. Here are a few excerpts:
"These tests, in total, suggested two things to me. Well, three things really. Firstly, we were not dealing with an homogenous, single disease entity. More likely, these people represented a group of disorders with common symptomatology, much as we had found in the closely related chronic fatigue syndrome.
Secondly, if one were not careful to divide this group up into appropriate sub-groups with common defining characteristics, the statistical assessment of the group would . . . fail to find real differences between these people and the “normal” population.
Thirdly, and for me most importantly, it suggested that we were finding stable states of health (or ill health) which were not subject to homoeostasis, or a return to “normal” function, any longer. I say this because the peculiarly individual “abnormalities” remained surprisingly constant over months or years, and had all the hallmarks of a stable adapted response. Whatever the original injury and damage, the expected recovery did not happen. . . . The temperature lowered into a state of mild hibernation, minimising physical demands of a system under stress. The person was not well, but was not as ill as they may otherwise have been. More importantly, they were not about to “recover” if recovery increased damage and shortened life."
"I learned that day that explanations based on indefinable (and essentially unprovable) psychological explanations are frequently our first answer, but are rarely our best."
"Specialists spend much of their time either squeezing hexagonal pegs into round holes, or finding no problems where clearly problems exist. Both these approaches cause immense problems for those with novel, challenging or emerging illnesses. In the “hexagonal peg” scenario, the problem is reduced to one which fits with the specialist’s training or interest. Failing to see the bloody obvious is less dangerous, unless the specialist is to give a report to a lawyer or insurer! Each approach can lead to gross errors, occasionally flirting with scientific fraud."
"Where causes are not easily found, we invent causes. . . . They need to make the majority of us comfortable that the causes do not apply to us. We need . . . a type of rubbish bin for medicine, where we dump the conditions and people who we either do not understand, or who make us uncomfortable. Psychology and psychiatry will do for now. These are pernicious bastard children of medicine. Ever ready with an explanation which fits the needs of the medical model, there is no escape for the people trapped in their prejudices."
I could continue quoting this excellent article, with content suitable for various threads. For example, the intervention of government and police in cases of parents trying to protect a child from the harm of chemical exposure -- similar to the recent BBC radio segment on parents of children with ME. I haven't finished yet, but consider the article well worth reading.
Most important may be that this doctor is still in business if he were in my country I would be seeing him already....
and he said he would do a follow up book maybe free maybe not as he did not say.... if the interest was there.
here
"With special thanks and gratitude, I dedicate this book to my friend and intellectual playmate, William Vayda, who died in early 1997. William was a man ignored by medical practitioners and science, much to medicine's shame. He remains the most effective healer I have ever met, a man capable of integrating the most diverse and apparently unconnected information for the benefit of his patients. I miss his companionship and his challenges greatly This is a book commenced, but never completed, in 1995 and 1996. It was “completed” of sorts around mid 1998. I have made only minor changes since then, and so I now pass it out to the community as a summary of the views and opinions I formed from the many years of wonderful education provided to me by my chemically injured patients. Like all would-be authors, I am always planning other books, and the next update. This one is for free, under Creative Commons, for passing on to anyone who may have an interest in its subject. The only restrictions are: 1. It be passed on without charge of any type (i.e. for free), and 2. It be passed on with attribution to me and a link to my download page http://web.mac.com/doctormark/DoctorMark/KUS.html
There is no charge, and no hidden agenda. I am simply keen to know the number of people interested enough to download it. As well, I’ll leave a feedback email button at the bottom for use by down-loaders. Your feedback will help me decide whether to rewrite, update or correct the book, and whether or not to print it. In ink. On paper. I am more than open to feedback & correction. Please email
drmark@bigpond.net.au
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