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!
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.
Discuss the article on the Forums.

Do I have CFS, ME, ICL, or AIDS?

Discussion in 'Immunological' started by cfsboston, Dec 22, 2011.

  1. cfsboston

    cfsboston *****

    Messages:
    22
    Likes:
    3
    Boston, MA
    Thanks! You must have read my first letter on the AIDS forums: http://www.thebody.com/Forums/AIDS/SideEffects/Q160149.html I got really sick, really fast, and I suspect portal-of-entry (male to female sexual transmission) was a huge factor. I also suspect that whatever the pathogen is its because its gone undetected for so long that it is becoming more powerful. That's part of the problem with these sham paradigms. They are not science, and not all CFS patients are the same. After all, a syndrome is a syndrome, not a disease. www.cfsstraighttalk.blogspot.com Genetic predisposition also becomes a variable too.
     
  2. cfsboston

    cfsboston *****

    Messages:
    22
    Likes:
    3
    Boston, MA
    DEAR CONGRESSMAN - SAMPLE LETTER

    Here's a sample letter to send to U.S. Senators and Congressional Representatives. Please feel free to edit as you see fit. Since they are gov't reps, they do not have separate email addresses so you'll have to copy and paste your letter into their online contact forms. Remember the government works for you....not vice versa!

    Permission is given to repost this letter. Please share.
    ===================================================
    Sample Letter:

    As your constituent, I am very much concerned with the lack of funding for research of Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME), often referred to as CFS/ME.

    CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/cognitive manifestations. See: www.imeassoc.com

    Research to help people suffering debilitating illness from CFS/ME, who are often homebound and bedbound, received a measly $6 million in federal funding last year, while perfectly healthy HIV+ people received $3.1Billion.


    NIH-Sponsored Research Funding (2011)

    HIV/AIDS = $3,086,000,000
    CFS $6,000,000
    Source: http://report.nih.gov/rcdc/categories/

    We are citizens and taxpayers. We used to be productive members of our society and we would like to be again. Please help us by creating research funding parity for CFS/ME with AIDS. CFS/ME is oddly still considered 'a mystery' 30 years after it achieved notoriety in the U.S. Just from what we know today, in terms of the immune dysfunction and human suffering, CFS/ME is just as serious a public health problem as AIDS.

    Please fund CFS/ME research to help us get well, so we can do our part again.

    Sincerely,


    ===================================================

    To find your government representatives:
    http://www.senate.gov/general/contact_information/senators_cfm.cfm
    http://www.house.gov/house/MemberWWW.shtml
    http://www.whitehouse.gov/contact/

    Information from: www.cfsstraighttalk.blogspot.com
     
    Ocean likes this.
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,659
    Likes:
    12,416
    Logan, Queensland, Australia
    http://blogs.discovermagazine.com/c...does-and-doesnt-cause-a-disease/#comment-5131

    Vincent Racaniello has written this piece on AIDS vs CFS. I have replied to a comment that there is only one difference, AIDS is a disease and CFS isn't. It is awaiting moderation. I thought some others might like to reply. Here is my comment:

    11. Alex Young aka alex3619 Says: Your comment is awaiting moderation.
    January 12th, 2012 at 9:14 pm

    In reply to: . Jon Says: January 12th, 2012 at 2:27 pm There is only one difference between AIDs and CFS. AIDs is a real disease that results in death if not treated. CFS is not a disease at all.

    This is a technicality. CFS is a syndrome and a number of definitions describe a heterogenous patient mix. The core disease that has occured in many geographical clusters (epidemics) is Myalgic Encephalomyelitis. The number of biophysical abnormalities is huge (thousands), but not routinely tested for indeed most pathology labs do not even have the required tests.

    Let me give some examples of these things to give an idea of the issues:

    1. Many with long term ME have heart damage. It is now apparent that this kind of damage might be unique to the disorder, but for most of the last ten years this was confused with regular diastolic heart failure/dysfunction. Heart biopsies frequently find viral infection when the biopsy is done, but biopsies are rare.
    2. Abnormal immune chemistry abounds. Take for example 37 kDa RNase L. It is found in most ME patients. It is also found in MS and Rheumatoid Arthritis patients, so it is not diagnostic. Most of the abnormal chemistry is shared, and so not diagnositc.
    3. Three abnormal findings have high diagnostic value and await validation: spectral coherance EEG (Komaroff); post exertional pathophysiology (Pacific Labs, Lights) and severely decreased NK cell function with a low bright cell to dim cell ratio (Bond University).

    This latter makes ME a type of non-HIV AIDS affecting NK cells and not T cells different, but not entirely different. ME has much lower mortality in the medium and short term, but the long term is questionable it doesnt kill as fast, but it does kill. Lymphoma is very common in ME patients, and some cases of Karposis sarcoma have been claimed, normallly found in HIV AIDS. However, ME morbidity is similar to HIV AIDS morbidity shortly before death ME is much more disabling during most of the disease history. Imagine feeling like an AIDS patient weeks before death, but it goes on and on and on for years and decades.

    Bye, Alex
     
    L'engle likes this.
  4. Nielk

    Nielk

    Messages:
    5,446
    Likes:
    5,873
    Queens, NY
    Thank you for this post!
     
  5. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    Alex,
    A lot more than three findings await additional research and validation:
    http://www.flimecfsforum.com/forum/index.php?f=4&t=587&rb_v=viewtopic#p990

     
    L'engle likes this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,659
    Likes:
    12,416
    Logan, Queensland, Australia
    Hi Levi, I completely agree. I selected examples out of a very very long list. The three potentially diagnostic tests listed represent those I think most promising today. Next month it could change, who knows. Bye, Alex

    PS I have written a review of the more promising biomarkers elsewhere that is not available for release yet. It resembes the list given on the link you provided Levi. In that review I had to be highly selective though: anyone reading Magical Medicine is aware of just how many abnormalities are known.
     
  7. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    Terrific Alex!

    Feel free to PM me with your list when you are ready to share it. Sounds like we are both interested in this topic. All that is needed is ONE biomarker. Just one. Then we would have subset(s) to study in depth. Then we could address the CBT psych lobby with evidence based data of an organic illness. That is why they have fought so very hard to quash all biomedical research and choke off funding for it.

    Apologies to cfboston for the thread drift. Do you distinguish Non-HIV AIDS and seronegative HIV? Seems like an interesting topic, but a rare phenomenon. To date, the medical orthodoxy has not accepted any evidence based proof for immune deficiencies in ME/CFS patients. Any patient with a pathological immune deficiency would be excluded from the diagnosis by any accepted definition of CFS.
     
  8. cfsboston

    cfsboston *****

    Messages:
    22
    Likes:
    3
    Boston, MA
    Nice work, Alex. I also emailed Racaniello directly. At least his article is a start, although not entirely acccurate....

    Neither CFS nor AIDS are diseases. A syndrome is a syndrome, not a disease. ME is a disease, just like MS or malaria.

    It's not just a technically. Great that you jumped on it!

    I am a Non-HIV AIDS Patient (Idiopathic CD lymphocytopenia), although I am ICD-coded a CFS patient.

    Any virologist in the USA that is also funded by the NIH annoys me. :)
     
  9. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    0.006 billion. It's tragic. Although I agree it's unstrategial to claim that other conditions are getting too much, both because they aren't, and, also because it would put us in a bad light - we've got a lot to learn from the spending situation around HIV. In the medical realm, it's very well known that if only a fraction of what's spent on HIV drugs and dispension in Africa, was also spent on preventing diarrhea, we would saved many more african lives for the same funds (yes!). But, it doesn't happen, and the biggest reason is publicity. Media attention to a problem is key to getting funds. I think we ought to work more and better getting the right kinds of stories out. The media is glad to get good news stories almost for free. I think especially the patient organizations should be more active. They could email their members, find patients both suitable and wanting to get their stories out (e.g. a care taker with a patient lying in a dark hole for years, as many of the worst of us do), and get the word out. It's stories which moves the public, and it's the public the politicians got to account for.

    Where there's a will, there's a way. Here's a great graph of among other things public spending. I am not even sure ME research would be a pixel there. www.informationisbeautiful.net/visualizations/the-billion-dollar-gram/

    Saying "lots of people" would die if money wasn't spent on HIV research for some time is a bit of an overstatement. AZT, which was used in the early days is still in use. If a patient would develop resistance for a drug, there's often times plenty to take from - but some of them come with harsh side effects. I.e. Raltegravir, a new good antiretroviral has (among other things) a big advantage over exsisting ones in that it's relatively speaking side effect free.
     
  10. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    My official diagnosis was CFIDS, it was NEVER CFS. I was diagnosed with chronic immune dysfunction. CFIDS and CFS are not the same thing and never have been, but over the years, there was a huge push in the medical field to mix the two up and make sure everyone was confused and untreated.

    After tons and tons of research, I'm starting to believe it was the vaccines. They create an upregulation of the immune system that does not shut off. And then if you are unlucky enough to get a trigger virus on top, you get CFIDS.

    Chronic Immune Dysfunction actually does sound like an alternate name for Non HIV AIDS. Acquired Immuno Deficiency. How is that any different from CFIDS? It's the name. Both are chronic dysfunctions of the immune system. One is taken seriously, the other is not. And it's simply because of the name.

    Anyone who still believes their government wouldn't harm them seriously needs to wake up and face the real world. You are being poisoned every single day of your life by aspartame, microwave oven radiation and a million other toxic things your precious government told you were safe and they were never safe. There is no mystery to why we are sick, the only mystery is in why so many people refuse to believe the truth of it. And the truth is out there.
     
  11. barbc56

    barbc56 Senior Member

    Messages:
    1,572
    Likes:
    968
    Is there really a condition called Non-HIV AIDS Patient? Can't find it in my research but it may be right in front of me and I'm just not seeing it. :>)
     
  12. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    There isn't, no. It was postulated a few years ago when some patients in China showed similar symptoms without being HIV positive, but the idea was dropped once the patients were properly investigated. The overwhelming scientific consensus is that AIDS is a specific condition caused by the HIV virus, rather than a vague description that could be applied to various other conditions as well. Haven't we all spent long enough arguing against being categorised as people who simply have "chronic fatigue", as it applies to so many conditions as to be useless as a name for a specific syndrome?

    If you look up "HIV denialism" and "AIDS denialism", you'll understand more about what is going on here. cfsboston can most certainly be categorised as an HIV denialist, as he has declared repeatedly, in the face of all medical evidence, that HIV is "harmless", "does not cause AIDS", and that people with HIV are "perfectly healthy". (Click on the link to his blog for further details, although he's already said plenty of it here.) Personally I find HIV denialism to be incredibly offensive, just as offensive as I find it to deny the existence or seriousness of ME, and neither should have any place in this forum or in any other forum which values human rights and sound science. I have no idea what is motivating cfsboston, although I have my suspicions based on the way he keeps stressing how he fell ill after a heterosexual encounter. (And on that subject, ME is not primarily a sexually transmitted infection. I've only rarely come across people who passed ME to a partner, in all cases a long-term partner rather than a casual sexual partner, which suggests that even with repeated exposure, the chance of spreading ME sexually is extremely slim. It's certainly far fewer cases than I can recall of ME being inherited in families for instance, or even of ME epidemics, and they're reasonably rare.) One common cause for HIV denialism is homophobia, and being a queer woman myself, I'm finding this entire affair extremely distressing on a personal level, as well as outrageous as an ethical issue.

    Just because we are often treated poorly by the medical profession, governments and society in general is no reason to attack other groups of people with other medical conditions. Frankly, I'm appalled that such behaviour is tolerated on this forum, as it's unquestionably the nastiest type of trolling I've ever seen. Hundreds of thousands of lives have been needlessly lost due to the South African government's former embrace of AIDS denialism. Discussing points of comparison with AIDS and speculating on how the two conditions may be related would have been a useful, sane and unbigoted discussion, but this is not the same thing at all.
     
    wdb, Wonko, Valentijn and 6 others like this.
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,374
    Likes:
    5,855
    I've only ever seen this one poster linking 'non-HIV AIDS' to CFS. They've just had a little run of starting threads.

    I agree wit a lot of what Calathea said, but I think it need to be remembered that most people with CFS are not going to be well enough to do the sort of reading and research needed to effectively challenge HIV denialism (we've already got a load of CFS quackery to get to grips with). The few responses these threads get could be due to these limitations, rather than a lack of desire to challenge the claims within.
     
    svetoslav80 and CJB like this.
  14. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    cfsboston is stated here to have the very rare syndrome Idiopathic CD lymphocytopenia:
    http://en.wikipedia.org/wiki/Idiopathic_CD4+_lymphocytopenia
    It is also sometimes called Non-HIV AIDS. It is associated with blood cancers, and has an unknown cause. It is a distinct nosological entity with mandatory criteria. I never challenge anybodies medical diagnosis and merely take them at their word if they say they have a certain diagnosis. I agree that HIV/AIDS denialism is off topic and inappropriate for an ME/CFS forum, but dealing with that is up to the moderators.

    Having Idiopathic CD lymphocytopenia and being ICD coded for CFS is an oxymoron: unexplained illness is a mandatory criteria for all CFS definitions, so cfsboston has been incorrectly coded IMHO, for whatever reason.
     
  15. barbc56

    barbc56 Senior Member

    Messages:
    1,572
    Likes:
    968
    Lots of good points and basically expands on what I found out after an afternoon of research.

    So it looks like bottom line is that the medical definition of Non-HIV AIDS is a distinct medical diagnosis which would exclude a diagnosis of CFS.

    Therefore a HIV/AIDS denialism discussion is an entirely different subject unrelated to me/cfs.

    Correct?
     
  16. alex3619

    alex3619 Senior Member

    Messages:
    7,659
    Likes:
    12,416
    Logan, Queensland, Australia
    I think there is sufficient evidence to state with a great deal of confidence (but never total, not in science) that HIV causes AIDS. However there are undoubtedly other acquired immune deficiencies that have nothing to do with HIV. They should never be given an AIDS label to avoid confusion, although comparison with AIDS is always valid, its one of the best understood, if not the best understood, immune deficiency disorders. Loss of NK cell function and a poor bright cell to dim cell ratio indicate that those with ME have an acquired immune deficiency. It is not (HIV) AIDS. The prognosis is different, the symptoms differ, and the degree of suffering is greater in ME for most of the natural history of the disease. Only at the end of their life do AIDS patients suffer worse than ME patients (on an average), although the short and medium term mortality rate is much higher with HIV. Also, as has been pointed out, ME occurs in epidemics and outside of epidemics has a low transmission rate. I know HIV has a relatively low transmission rate, compared with for example Hep B, but ME appears to be a lot lower than that.

    So there are undoubtedly similarities, but there are also differences. We can learn from both.

    Is there an infective agent involved in ME? It is highly likely that one or both of two things is correct: there is an infective agent or that there is a chronic abnormal immune response triggered by a range of agents. A retrovirus would fit the evidence nicely, but so far nobody has been able to prove it despite finding reverse transcriptase in ME patients. There is also some evidence that a genetic predisposition may be required.

    Bye, Alex
     
  17. barbc56

    barbc56 Senior Member

    Messages:
    1,572
    Likes:
    968
    A retrovirus might fit nicely but you have to start with a hypothesis first and not the conclusion. The RV theory is looking more and more like it will not pan out as it would probably have been found by now. If the RV hypothesis is true, I think the only remote hope for this panning out would be by second generation sequencing.

    There could be other causes to add to your list such as autoimmune or is this what you are saying? Does there have to be a triggering agent? I don't know. I think genetic influences will be found to play a big role but this is speculation on my part.

    I was thinking the reverse transcription in XMRV is not the same or doesn't mean the same thing? Maybe someone can chime in on this, if you have scientific knowledge beyond what I have, LOL!!
     
  18. cfsboston

    cfsboston *****

    Messages:
    22
    Likes:
    3
    Boston, MA
    All conditions deserve funding. I agree, and would never argue otherwise. HIV is not the cause of AIDS, however. So all funding to HIV needs be halted, and re-allocated to CFS/AIDS research. So, it is righteous and deserving to put these two figures up against one another. www.cfsstraighttalk.blogspot.com
     
  19. cfsboston

    cfsboston *****

    Messages:
    22
    Likes:
    3
    Boston, MA
    America's Biggest Cover-Up: 50 More Things ...CFS And Its Link To AIDS

    by Neenyah Ostrom
    Source: http://www.fms-help.com/aids.htm

    Table of Contents

    Foreword

    1. Some CFS Patients May Be "Non-HIV AIDS" Cases

    2. A Virus Found In AIDS Patients Is Found In CFS Patients With Brain Lesions And May Be The Primary Attacker Of The Immune System

    3. HHV-6 Kills An Important Immune System Cell In AIDS And CFS Patients

    4. HHV-6 Seems To Be Causing Lung Disease In Immunosuppressed Individuals

    5. A Virus Found Growing In CFS Patients Has Been Linked To Miscarriage

    6. HHV-6 Infections Can Be Fatal

    7. A New Virus, HHV-7, Has Also Been Found In CFS Patients

    8. A Natural Immune System Anti-Viral Pathway Doesn't Work In CFS

    9. A Mysterious Organism Called A Mycoplasma May Be Peripherally Involved In CFS

    10. Just As In AIDS, Immune System Cells Called Monocytes Do Not Work Properly In CFS Patients

    11. As In AIDS, The Immune System Is Both Over-Stimulated And Depressed In CFS

    12. One Researcher Thinks That CFS Should Be Called "Lymphokine Overdose Disease"

    13. CFS, Like AIDS, May Be Primarily A Tumor Necrosis Factor Disease

    14. Zinc Deficiency May Contribute To CFS

    15. Magnesium Can Be A Missing Element In CFS

    16. There Is A Hormonal Imbalance In CFS Similar To The One In AIDS

    17. CFS Patients' "Crimson Crescents" May Be Diagnostic Of The Syndrome

    18. CFS Patients May Develop A Cancer Similar To One Found In AIDS

    19. Like AIDS Patients, CFS Patients May Be Especially Susceptible To Tuberculosis

    20. CFS Patients Have A Brain Defect Similar To That Found In AIDS Dementia

    21. There Can Be A Significant Weight Fluctuation In CFS

    22. Dizziness Can Be A Severe Problem In CFS

    23. As In AIDS, Sinusitis Can Become Chronic In CFS

    24. A Recent Rise In Childhood Asthma May Be An Effect Of The CFS Epidemic

    25. Endometriosis Seems To Be Common In Women With CFS

    26. Pregnancy Can Be A Disaster For A CFS Patient

    27. Men With CFS Can Develop Chronic Prostate Infections

    28. CFS Can Cause A Particular Type Of Heart Murmur

    29. Like AIDS Patients, CFS Patients May Bruise More Easily Than Healthy People

    30. CFS Can Lead To Serious Diseases Of The Mouth and Gums

    31. CFS Can Cause Perception Problems For Drivers

    32. People With CFS Often Have Bizarre Sleep Problems

    33. CFS Is Often Characterized By Nausea

    34. CFS Patients Can Develop Serious Bladder Problems

    35. Fingers Can Become Swollen In CFS

    36. CFS Patients Can Develop Skin Rashes And Other Disorders, Especially Acne And Shingles

    37. The Hair Can Be Severely Affected By CFS

    38. CFS Patients Can Have False Positive Tests For Syphilis

    39. In CFS Patients, As In AIDS Patients, The T4 Cells May Be Sequestered In The Lymph Nodes

    40. Sunbathing May Make CFS Symptoms Worse

    41. As It Progresses, CFS Can Be Measured In "Stages"

    42. Some CFS Patients Become Suicidal

    43. Health Care Workers May Be At Increased Risk For CFS

    44. CFS Can Result In Financial Disaster

    45. A Drug Made From Pig Liver Appears To Help Some CFS Patients

    46. An Experimental Drug That Appears Promising For CFS And AIDS Is Being Evaluated By The FDA

    47. Nothing Is Being Done To Protect The Blood Supply From CFS- Infected Blood

    48. CFS Has Spawned A Powerful Patient Movement That Has Become Mired In Denial

    49. The Two "Variants" Of HHV-6 Appear To Act Very Differently

    50. A Virus That Causes An "Acquired Immune Deficiency Syndrome" In Pigs May Be The Real Cause of CFS And AIDS

    {more}

    http://www.fms-help.com/aids.htm
     
  20. Kina

    Kina Moderation Team Lead

    Messages:
    5,790
    Likes:
    4,662
    Ontario, Canada
    If all people who die of AIDS have one thing in common -- infection with HIV -- that is an indicator that HIV does cause AIDS. I am not sure if the relatives of the 35 million people who have died of AIDS would necessarily agree that funding to HIV needs to be halted especially when each of these 35 million people had one thing in common -- infection with HIV. Countries that have aggressively pursued preventative measures and HIV treatment with ARV's have seen a decline in HIV infection and AID's deaths. Countries, like South Africa under the Mbecki regime, saw increased AIDS deaths from HIV infection and thousands upon thousands children dying of AIDS at a very young age from being infected via HIV positive mothers. There is no other reason for these deaths.

    I have personally seen people die horrible painful deaths from being infected with HIV that has progressed to AIDs -- riddled with cancer, unable to breath from pneumonia, unable to eat, in massive pain -- all of these people had one thing in common -- HIV infection. Funding into HIV does not need to be halted. People with HIV and AIDS deserve every penny spent on their illness. Yes, a ton more money needs to be spent on ME research but they are different illnesses. I have spent precious time and energy raising money for children in Africa who have no parents because they died of AIDS because they had no access to ARV's. People with access to ARV's live longer, those with no access die. That's a fact.

    Just because you say, cfsboston, that HIV does not cause AIDS doesn't mean it is true. You would probably get a better response if you left AIDS/HIV out of the equation and dealt with the lack of funding surrounding ME. I, personally, think more funding for ME is necessary, but why at the expense of other illnesses.

    Frankly, I find your comments to be very disturbing on many levels.
     
    JAH, Merry and CJB like this.

See more popular forum discussions.

Share This Page