Thank you Mary! This is one of those jobs that belongs to nobody and you did it
and did it very well.
I was just reading a free online book before I looked at this post...
take a look at the contrast...
"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."
I don't know if he is right or not I don't know if all his findings are true... I don't know if his treatments worked I can't recall what they were if he had any... this book was written years ago and is free online... he says if there were demand for it he would write anohter.... I did intend to write and demand it but never did...
since you are such a great advocate it is a link you should have
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...
Now if I am to live my life with a disorder that challenges me in so many ways already I would prefer to have some treatment... especially when I have to pay for it... some treatment that treats me with some respect from a person who believes what I say...
the difference is glaring to me...
in the end Mary it will matter how we lived... in the middle too... thank you again.