1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Am I invisible ?

Discussion in 'General ME/CFS News' started by SaveMe, Mar 8, 2011.

  1. SaveMe

    SaveMe *****

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    thank you dannybex, if facebook gets a few more reports, they will take action!!

    I bet some psychiatric or doctor created this page. I mean who else has the time? And not too many common people know of the illness.
  2. SaveMe

    SaveMe *****

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    And I also want to thank who ever started this whole forum and the community. Without support I probably would have just overdosed on my pain killers, if you know what I mean.
    Not being understood almost hurts just as much as the illness itself.

    ==:?
  3. Michael Dessin

    Michael Dessin Senior Member

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    SaveME..first words of advice if you have CFS, never ever listen to what the CDC/NIH says about your condition.

    Second, find a doctor who will administer IGG IV's and start Glutamine for your stomach in conjunction..there is a chance that that combo can make you well at your age and length of illness. Mike
  4. SaveMe

    SaveMe *****

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    Hey Micheal,
    some of the best treatment advice yet! thanks man. Are you the same guy who lost all that weight? I am slowly losing weight myself.
    I had all of my Immune Globulins tested and they were all normal except for Ige which was elevated. I will Nancy Klimas and Levine soon, i'm sure you know them. Glutamine just the powder at vitaminshoppe? Glutathione injections? What about ldn, xyrem, and vitamin cocktails/ivs , ampligen?
    And any ideas on what triggered your cfs?
    I ask alot of questions, but I appreciate your input.

    in addition, you mention dont trust the cdc/nih. Do you know how much they are spending on this illness, man? All of the research and publications that are going on right now.
    I think too many people resent the cdc because when doctors are stumped who is there to blame? And I heard theories about them "covering up CFS" Why would they do such a thing?
  5. me_is_realist

    me_is_realist

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    Well I dispute your spurious ratio! I myself am a male, and have had it since 13!..
  6. SaveMe

    SaveMe *****

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    Okay I lose you guys win. :) Its was just info that I saw from some sources on the web. You guys and your stories mean alot more to me than old stats--they truly do.

    Me_is_realist, 13 WOW such a young age. How did it affect you during onset, what were some of the first symptoms you experienced?
    And my big Q: what do you attribute this illness to, if anything? (trigger)

    It all started with the brain fogs and disorientation for me, and from there -----> other things started happening.
  7. WillowJ

    WillowJ Senior Member

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    half of Fukuda-CFS have anti-nuclear antibodies (a general type of autoimmune marker, antibodies made against something in the cell nucleus, such as DNA or the nuclear envelope)
  8. 5150

    5150 Senior Member

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    There are several people on this board who have been sick longer than you are in years -old. for instance, myself , for 30 years... from the way you speak ,you can't be mor ethan 20. Do Research. Read Oslers Web. Then at least you won't come in here being a CDCadvocate. Meanwhile, it always helps to practice common courtesy, no matter how inexperienced you are. Keep trying. Don't give up.
  9. SaveMe

    SaveMe *****

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    Oslers web is on my book list. Here is an interesting quote I discovered today,

    "A cellular biologist at Baylor College of Medicine believes that in certain people a genetic component sets off an explosive chain of events. The only thing that had happened was is they took this vaccine and within a month, most of these people have completely debilitating fatigue and lifestyle changes (ME-CFS)"
  10. WillowJ

    WillowJ Senior Member

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    yes. $4 million per year. Less than is spent on hay fever. Compare to Multiple Sclerosis, not a particularly well-funded disease, and with fewer patients, but which already has actual treatments: $144 million. Compare to Parkinson's (or Alzheimer's, I forgot which), which is similarly not well understood, $500 million (or $550 mil, I don't recall which).

    Then consider that of that $4 million, those monies are actually spent on random fatigue and depression conditions which DO NOT meet the CDC's official criteria for CFS (see Dr. Lenny Jason's article which you can read in full here, although the results are published under the title of CFS... please check out some samples of the CDC's fine handiwork here and here), and diverted to other programs because the CDC can't think of anything constructive to do with it.

    And do look at Mindy Kitei's blog www.cfscentral.com,
    Hillary Johnson's site www.oslersweb.com (and her book by the same title: Osler's Web: Inside the Labrynth of Chronic Fatigue Syndrome),
    and Mary Schweitzer's essays: http://www.cfids-me.org/marys/essays.html



    and no, much of the (comparatively little) research going on is done by private and university funding. Nothing important we know was done by our health authorities (although some of this work done by independent and universisty groups had grants from NIH).
  11. SaveMe

    SaveMe *****

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    WillowJ,
    thanks for taking the time to write at length and hyperlink everything! I have a lot of catching up to do, so it seems. :)

    In regard to cdcs handiwork, that is just awful. Studying the association between cfs and maladaptive behavior. Really? I was stuck by ME, as many know, from a Hep Vaccine. Look at this one too http://www.bmedreport.com/archives/19302

    "A soon to be published study suggests that chronic fatigue syndrome is associated with an increased prevalence of maladaptive personality features and personality disorders. Researchers found that this might be associated with being non-compliant with treatment suggestions, displaying unhealthy behavioral strategies, and lacking a stable social environment. " Now thats just messed up.

    I never knew parkinsons got 500 mil.Oslers web...will read soon as well as those 2 other links you posted. I just wanted to do a quick reply before i forget.
    I thought CDC was doing a 5 year CFS initiative with a total investment of 5 Bil??
  12. WillowJ

    WillowJ Senior Member

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  13. SaveMe

    SaveMe *****

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    "It is appropriate to be concerned as to why the truth of this epidemic was not revealed and why it continues to be supressed."

    Precisely. You know I'm really beginning to believe that the CDC deliberately tries to keep the public confused. First, it was the scandal with this disease (not wanting to investigate it and then labeling it, although they didn't believe it was real). Next, it was the huge scandal with the funding for CFS research. And then they admit (but who read this) that CFS can be disabling as MS, stage 3 AIDS, renal failure and COPD. Now, they are trying to once again confuse everyone and blame the victims by suggestioning that this disease is stress related. Also, they want to work on "prevention" now. Let's see if this makes sense.... they want to work on prevention, but yet they still haven't figured out (or have they?) what causes this illness. This is what the government did with Gulf War Syndrome.. keep the public confused, so they won't have all of the facts and still question whether or not the illness is real. The truth will come out eventually.... I'm doing my part and so is John Anderson, the person who wrote this very well articulated letter

    WHY THE COVER UP u think ? mooney> ??

    WHY is the cfs population so utterly Small ? Why arent people getting this thing left and right? I sound like an ignorant person, but I wish more people (and reputable people/ movie stars/ doctors) would develop CFS so we can have our walks and parades like all the other illness have. Yet, few very people have this illness. It seems we all fall into a very small category that the world would like to forget about!!
  14. WillowJ

    WillowJ Senior Member

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    no, there are no billions. sorry. this is a horribly neglected disease. there is a 5-year initiative, with 4-5 million (depending on the year). the 5-year initiative is very heavy on adverse childhood events, personality, maladaptive behavior, allostatic stress, stress-related disease features (genetics and select HPA axis features such as cortisol level), and selected immune features (thought to be created by stress and deconditioning)... and completely ignores all of the more serious medical problems. Most importantly, it doesn't study real ME/CFS patients.
  15. SaveMe

    SaveMe *****

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    So lets fight back, what can we the people do about it? And this part got cut off last time...

    WHY THE COVER UP u think ? mooney> ??

    WHY is the cfs population so utterly Small ? Why arent people getting this thing left and right? I sound like an ignorant person, but I wish more people (and reputable people/ movie stars/ doctors) would develop CFS so we can have our walks and parades like all the other illness have. Yet, few very people have this illness. It seems we all fall into a very small category that the world would like to forget about!!

    Since I've been "left behind" and have suffered chronically, I question morality and the world for that matter.
  16. sickness

    sickness

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    Also these two: http://forums.aboutmecfs.org/content.php?243-Compadres-in-Scarcity-the-Bottom-of-the-Barrel-at-the

    http://forums.aboutmecfs.org/content.php?250-Inadequate-NIH-Funding-for-CFS-by-Pat-Fero-MEPD

    take care, ness
  17. SaveMe

    SaveMe *****

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    And I apologize if I have done a posting overload. I didnt really do much today, so I had alot of free time on my hands. I'm just scared, really scared.
  18. Victoria

    Victoria Senior Member

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    Don't be scared SaveMe,

    Be educated.

    By that, I mean spend as much time as you are able, reading & researching ME/CFS so that you understand the history/symptoms/ages/genetic pre disposition, triggers & so on.

    Being forewarned is being forearmed in the sense that you understand there is no easy 'fix' (or 'cure').

    I found the most helpful thing was to read patients stories.

    It's important to know you are not alone - there are hundreds of thousands of sufferers all around the world of every race, colour & religion.

    In this world of the internet, there is always someone to reach out to. You will probably find people who don't believe your symptoms or how you feel each day. But then most invisiable chronic illnesses are hard to believe.

    After a while I got so used to being unwell, fatigued & in pain, I forgot what 'normal' was & so just accepted life as it was.

    On the 31st Dec 2010, in the early hours of the morning, I went via ambulance to the local ER with crushing chest pain & having trouble breathing (I thought I was having a heart attack). While I was in the emergency department, a lady was bought in screaming hysterically in terrible pain. Despite being put in a soundproof room, we could all hear her screaming. I overheard a nurse say that she had Fibromyalgia (like I do). She screamed hysterically for hours & hours (I was there 12 hours so heard her).

    At the time, I felt great sympathy for her.

    I was in pain myself (although Angina meds had reduced the severity somewhat). Other than having tears in my eyes, I didn't yell or fuss at all - I was so used to having episodes of severe pain that I just calmly accepted whatever came my way that night.

    We all react differently to our chronic illnesses, but acceptance & being pro-active/involved in your treatment makes a big difference to how you cope with chronic illness.
  19. SaveMe

    SaveMe *****

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    did they ever find the cause of chest pain?
  20. Michael Dessin

    Michael Dessin Senior Member

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    Um yes Im that guy..great comments from Willow and others.

    Really does boil down to politics.

    As far as treatment, from my experience IGG is the best option for those who just come down with CFS, fresh IGG to clear the virus before it gets deep into the tissues and cause the more dramatic long term issues. The glutamine will help heal the gut as the infection is beleived to start there and go onto other areas from that point. The military stock piles IGG for this very reason, when the troops have viral exposures that can potentially be harmfull they use IGG. Unfortunately that has raised the cost of it ALOT.

    You really want to do 6 months of both to make sure all is clear. Ampligen is great but at this point it should not be a number one option nor glutathione. Vitamin cocktails always nice and Xyrem is very effective for sleep, but very addictive so be careful. As for the CDC, I think everyone covered that topic in great detail and offered links :)

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