Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Dr Mark Donohoe cfs mcs

Discussion in 'General ME/CFS Discussion' started by btdt, Jul 10, 2017.

  1. btdt

    btdt Senior Member

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    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
     
    Last edited: Jul 10, 2017
  2. btdt

    btdt Senior Member

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  3. btdt

    btdt Senior Member

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    Jennifer J and Richard7 like this.
  4. btdt

    btdt Senior Member

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    this was dated 2008
    Captions for figures referred to in book Note that these figures and graphs have been “misplaced” upon the journey. I put in the captions so that one may have a “feel” for the content
    Fig 1 (graph entitled
    “Cotwatch Respiratory Monitor test”) “Respiratory monitoring shows major differences in multiple chemical sensitivities compared to controls. In MCS, much of the time asleep is spent in apnoea, with gaps of over 20 seconds between breaths common”

    Fig 2 (graph showing bell curve, entitled “Evoked response P300 wave latency) “Distribution of the so-called P3 latency of the Auditory Evoked Response Potential test is distributed normally in the population

    . Fig 3 (graph showing 2 bell curves, entitled “Evoked response - MCS and CFS patients) “In multiple chemical sensitivities, many of the physiological measurements were not normally distributed as a single population. In the AERP, a test of nervous system function, two distinct populations emerged.

    Fig 4 (“coathanger”-shaped hierarchical chart) “Proposed formal categorisation of different types of adverse reactions. One important question is that of where multiple chemical sensitivities should be placed on this structure.

    Fig 5 (entitled “Sensitive and Normal separate” - two bell curves) “In the usual interpretation of multiple chemical sensitivities, sufferers are considered a separate population to the majority.

    Fig 6 (entitled “Sensitive People Part of Normal population” - one bell curve) “Multiple chemical sensitivities may represent one end of the population, typified by the characteristics of certain known groups!

    Fig 7 (entitled “Sensitive and Normal separate - No worries” - two bell curves) “The potential harm for the majority of the population by, say, 2020 may not be great if the sensitive population really is different from the majority…

    Fig 8 (entitled “One population - start worrying now” - one bell curve) “If we are part of a single population, small changes in exposure may see a rapid increase in the proportion of the population affected.

    Fig 9 (single line graph, entitled “Progressive dose-response curve” “Standard dose-response curve with low slope and near linear relationship over most of the range.

    Fig 10 (single line graph, entitled “Rapid escalation dose-response curve” “A dose-response curve with a rapid rise, giving appearance of an “all or none” response.

    Fig 11 (two line graph, entitled “Rapid escalation dose-response curve” “Comparing the curves, the rapid escalation curves give almost zero response at the first vertical line, and virtually a full response by the third.

    Fig 12 (entitled “Many different dose-response curves”) “Dose-response curves may be complex, organ specific, and interdependent, making the concept of a predictable response to a dose of a particular chemical or other environmental toxin inherently unpredictable KUS • Dr Mark Donohoe (internet Creative Commons release 2008)
     
  5. taniaaust1

    taniaaust1 Senior Member

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    I like to say that an Sth? Australian MCS researcher months ago was on the radio and she has put recently out a book on MCS which Im planning to buy. If anyone wants the details of her and her book just send me a pm and I'll mail u the info when I come across it in my home.
     
  6. taniaaust1

    taniaaust1 Senior Member

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    I cant get http://web.mac.com/doctormark/DoctorMark/KUS.html up
    "This site can’t be reached
    web.mac.com’s server DNS address could not be found.

    DNS_PROBE_FINISHED_NXDOMAIN"

    is it working for others here? ...
     
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    The way you wrote those alerts won't work. They have to look like this:
    @ljimbo423
    @Richard7
    or like this
    @Mary @Old Bones @Jennifer J

    The spacing between them doesn't matter. The @ symbol needs to be directly in front of their username - that's where you went wrong.

    Other hints:
    1. It won't work if you're trying to alert someone by editing their username into a post you've already made.
    2. A maximum of five alerts per post will work - any more than that and not all of the alerts will work.

    You don't have to write a new post now to alert these people. They'll see my post plus the original post you made.
     
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  8. Richard7

    Richard7 Senior Member

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    @btdt Thanks for the link to the book. I read it after seeing your link to it in antother thread - and then had a sleepless night and forgot all the things in it that interested me (bloody ME/CFS) but intend to reread it when I next have a clear enough head.
     
  9. Luther Blissett

    Luther Blissett Senior Member

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    taniaaust1 likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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  11. ahmo

    ahmo Senior Member

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    I have a friend down the road. She is far sicker than I've ever been, probably 20 years. Mark's her Dr, she has phone consults w/ him, and works w/ him to make life as good as possible. She's had some very very bad periods, and seems to come good, as well as possible, w/ his guidance.
     
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  12. btdt

    btdt Senior Member

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    I did send him an email asking I can't recall exactly what I asked but I urged him to write that second book... told him of the post here sent him a link... questioned treatment options he may have found along the way.
    so far no response....
     
  13. btdt

    btdt Senior Member

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    @CFS_for_19_years said
     
  14. btdt

    btdt Senior Member

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    short quote from the same free online book page 22

    I took the "quieting" drugs for years.

    "Alzheimer's disease does not recover, while multiple chemical sensitivities can certainly improve, even if they do not “recover” in the usual sense of the word. The paradox is that, during the recovery phase, the sufferer will often complain increasingly bitterly about their problems, and tell their doctor that things are worsening rather than improving. The doctor may notice that they are clinically improving (they could not complain at all coherently previously!), yet assume that something is really making them worse, as they say, and institute a fruitless search for this “confounding factor”. The AERP provides a useful “window” on this situation, and is a very good tool for feedback on progression or improvement of the illness. The other useful tool is the sufferer’s chaperon (spouse, child, parent, etc.). As the person improves in neurological function, the AERP and the close family both are sensitive “indicators” of objective improvement. If the sufferer is complaining more vehemently about things he cannot do or remember, but the chaperon and the AERP both suggest improvement, then things are improving as expected and the person can be reassured that their complaints will soon improve. It is only when the P3 is getting close to 308 milliseconds (say, between 290 and 330 milliseconds) that the person will start to notice the improvement and “normalising” of their previous problems. I believe that this failure to understand the nature of chemically induced brain damage and the process of recovery lies at the heart of so many failed interventions in multiple chemical sensitivities. Many doctors believe that the job is to make the person complain less, and for a brain injured person, this can certainly be done with strong psychoactive medications. There, a good shot of a major tranquilliser, or a sedative, or an antidepressant and - wow, the person is complaining no more! Miracle cure!"
     

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