1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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A Sad Loss of a Member of Our Community

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Oct 29, 2013.

  1. leela

    leela Slow But Hopeful

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    ^$&*%#!!!
     
  2. JT1024

    JT1024 Senior Member

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    I am very sad to learn of another loss. This makes two that I learned of today. The other was a former member of this forum.

    While I try to keep up with science, conferences, and the political crap surrounding ME/CFS and similar diagnoses, I see some progress yet too many are losing their lives and their hope. Since I'm struggling myself and have been for years, it is truly scary.

    We all need to encourage one another as best we can. My first inclination is to encourage prayer for one another yet this isn't PC/politically correct today. I no longer give a rip about political correctness. If you don't have a faith, fine.... it is absolutely your choice and hopefully you are ware of the true teachings of the various "religions". If anyone chooses not to believe, that does not mean I will not pray for you or I don't care.

    We have lost several people, many active on PR in the past, in the last few weeks/months. We also may not be aware of all of the losses as many are isolated and we may not learn of their demise for days/weeks/months.

    While I'm not active on PR as I once was, I value people I've met on PR and continue to value the knowledge I've gained. Several issues divided this community in the past and many left. I became less active and participated in other communities but remained a member.

    Just as Boston suffered losses at the Marathon, Boston remains Boston Strong and so should we.

    Red Sox just won so Boston is continuing to B Strong!
     
    Beyond and rosie26 like this.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    In the 20th century!? :aghhh: :mad: :(
     
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Some doctors would say that your TSH is normal, but your T4 is low. This suggests that your pituitary might not be functioning correctly.
    I think a good reply to that (which I would not have thought of at the time) would be to say, in an equally nice voice, "I understand that you did not study supplements and cannot really say anything about them".
     
    Tammy, leela and Crux like this.
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    well, 1800s, no idea on 20th century
    http://en.wikipedia.org/wiki/Ignaz_Semmelweis


    also see COVERSION DISORDER by psychs, sure some such might be psychological but those ASSHOLES ignore the fact they claimed exactly the same for folk with Multiple Sclerosis until the 1980s
    DESPISE the bastards
    http://en.wikipedia.org/wiki/Conversion_disorder
     
    alex3619 and peggy-sue like this.
  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Quicker and more efficient ways of brainwash young minds into Pharma Drones. Oh guess who finance them? And who gives the obedient docs x rewards per x prescriptions? Holidays, massages, oh yeah it happens... And who is trying again to ban supplements? ;)
     
    Last edited: Nov 1, 2013
    peggy-sue likes this.
  7. alex3619

    alex3619 Senior Member

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    I finished my IT degree in 1992. I finished my BSc in 2002. I learnt much more about theory of science in my IT degree than my biochemistry degree. Modern degrees, at least here, have become more about cramming facts and techniques into students than getting them to think. What tutorials do focus on thinking are stuck in very narrow molds. That is in part what is wrong with many doctors. The mode of thinking taught to diagnose and treat disease does not equip them well for dealing with complicated issues in science. A doctor with a good classical education, or something equivalent, before they got their medical degree ... that's often different. Similarly for doctors who have more aggressively pursued critical thinking, but these tend to be researchers (but not all researchers think critically).
     
    L'engle and Sea like this.
  8. PhoenixDown

    PhoenixDown Senior Member

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    When I was in hospital I asked this question to the doctors, there answer?

    Just doing my job. It's not our job to look at journals or research or tests that you've read about in studies. They were unanimously disinterested in such things.

    Remember, they aren't paid to think beyond their boundaries. One retiring GP recently told me he sleeps well at night knowing he's done routine tests.

    It's just a job to most of them. I'm guessing that they go home and forget about work. I'm not saying they don't sympathise what so ever when they see you but lots of bad things happen in the world and you're not their problem. Even if they read about non-routine tests & treatments, they rarely want to stick their necks out on the line, after all you're just one patient out of thousands.

    Edit: Nurses have told me they could lose their job just for putting me in contact with someone who was willing to administer b12 injections. This is in the UK.
     
    Last edited: Nov 1, 2013
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  9. Nielk

    Nielk

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    In the U.S., many docotrs will look at the CDC site for information on illnesses that they are not so familiar with. This is what happened when I presented to my GP 10 years ago with my symptoms. My doctor said, it is either depression (it clearly wasn't) or chronic fatigue syndrome but, it doesn't matter which one because they are both treated the same way; with anti-depressants. In addition, exercising will be very beneficial! (straight from the CDC website).

    I hold the CDC directly accountable for the decline of my condition for many years.
     
  10. Freddd

    Freddd Senior Member

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    The whole battle is going on again. In the 50s, I INSISTED that the orthodontist wash his hands right in front of me before working on my mouth. They rarely did in those days. In the 80s and 90s when we were doing office audits and reviews of office cleanliness, including sterilization of instruments and hand washing, there wasn't enough washing. RIGHT NOW part of the big campaign to control MRSA is, you guessed it , hand washing between each patient.
     
    Little Bluestem likes this.
  11. leela

    leela Slow But Hopeful

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    I do too, Nielk.

    I looked at their stupid site, didn't fit their stupid definition, and just thought I'd push through and bounce back like I always had. "Chronic Fatigue Syndrome" sounded stupid, and not like "me" (!) so I made myself way worse,trying to push through, thanks to them.

    I'm usually not a blamey kind of gal, but in this case, I hold them 100% responsible; they have had DECADES to get this right. It is infuriating, and aggrieving, because how many other people--and lovely young ones too--have gotten sick in that time? Grrrrr!
     
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  12. Freddd

    Freddd Senior Member

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    Oh yes, the CDC. Back when I was really sick and had time on my hands, I read basically everything you wanted to know about smallpox. All the significant historical scientific documents were collected in there. I read that and was doing modeling of the spread of AIDS using a program called LIFE which is a cellular automaton which spreads by rules. Using the information of the death of French army recruits dying of the usually terribly rare Progressive Vaccinia (the vaccination lesion grows until it kills you) . The intersection of the smallpox model with the AIDS model always results in AIDS being prevented from spreading and killed off by everybody infected with HIV getting smallpox and dying the next time it came around (each 5-7 years). They didn't even want to look at it. I wrote a paper and almost finished the footnoting when I got much worse for several years and it got put aside for "after I'm well". It was inconceivable to them that HIV-AIDS is the result of an ecological upset, the removal of a predator if viewed on a macro scale.
     
    Beyond likes this.
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Freddd
    Your hypothesis is entirely logical, whether it occurred that way or not is another matter requiring lot of research, but the ludicrous view of the System is that "getting rid of a disease = GOD MODE!" and has no downsides, which is bullcrap
    we live in a real very complex world, practical biology is so complex it makes physics look like playing noughts and crosses :p
     
    alex3619 and peggy-sue like this.
  14. Freddd

    Freddd Senior Member

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    Hi Silverblade,

    Who knows whether it occurred or not. The new smallpox vaccine no longer uses live Vaccinia virus so that it no longer kills the HIV infected. However, it was the ONLY hypothesis that integrated the explanation for hemorrhagic smallpox which was worse form the beginning but only for the specific person, those it spread to had "normal" variola major. The difference was that about the time people who were going to survive were over the hump, these folks died, 100% instead of 35%. The hypothesis at the time, in the 30s and 40s, was that this was caused by some sort of immune deficiency (hmmm). They were even people that had previously survived smallpox and should have been all but totally immune for life. Nobody was actually totally immune for life but normally the second case was not even recognized as smallpox but rather was a minor sore throat or conjunctivitis.

    Being a system analyst that is how I looked at it, a system that had to account for all that actually happened.
     
  15. alex3619

    alex3619 Senior Member

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    Yes, MRSA is in half of all medical professionals, and a third of patients. That is also not the scariest superbug out there.
     
  16. end

    end Senior Member

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    Exactly why a well known local CFS/ME Doctor here in Brisbane has altered his "treatment stance" over the years - liability issues
     
  17. stridor

    stridor Senior Member

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    It doesn't matter what words are selected if someone has ever had an Axis 1 diagnosis like, Bipolar Disorder.

    It does not matter what I say or what materials I present - I am considered delusional. It does not matter that I do not have any symptoms, nor if I do not need to take psychotropic medications. My insistence that Bipolar Disorder was simply symptoms of larger underlying metabolic problems, falls on deaf ears.

    My diagnosis will be Bipolar Disorder the rest of my life. Shame on them....
     
    Sea, Crux, leela and 2 others like this.
  18. Freddd

    Freddd Senior Member

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    Hi Stridor,

    You have put your finger on the number one flaw with medical records as they now exist and are used. Bad diagnoses are forever. They are never annotated as "worthless in terms of effective treatment" and so forth. MeCbl and AdoCbl in deficiency can cause all sorts of mood and personality disorders. I was called all sorts of things including one MD who sat and talked for a while when I was manning a vendor booth at a local science fiction convention. He asked me if I had ever been diagnosed as "schizophrenic". I asked him why and he said "your affect". I asked him what effect having mind-bending extreme 3-5 day headache loaded with drugs might have on my affect. He said "And you are walking around with that right now?" I told him it was either that or abandon the convention of which I was a supporter. Another time I was interviewing the head of a brand new chronic pain practitioner organization under basically the same conditions and he said about the same thing. They were both 5 years into the CFS crash. I told both docs (in my everyday life I dealt with docs all the time, gave presentations at group medical conferences and searching the records for fraud and malpractice) that they were very misinterpreting the effects of a terrible headache combined with multiple medications. In the end the doc in charge of the pain practitioner certification group called me naïve about why no doctors would treat my severe intractable pain. They would have to give me morphine and back in 92 or 93 they just were not going to do that for chronic pain, so they called me names and mistreated me with psychotropic drugs or at least attempted to as the easiest way to get rid of me. Things are often not what they seem.
     

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