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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Is there any literature to prove the validity of this disease

Discussion in 'General ME/CFS Discussion' started by Aerose91, Nov 12, 2013.

  1. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268
    As in, verified medical literature? I'm getting really sick of being told my disease is psychosomatic. Basically everyone around me with the exception of just a couple people either refuses to acknowledge that I'm even sick or tells me that i need a psychiatrist. I've never been more insulted considering I'm bed ridden and barely grasping reality.

    I have the SPECT scan and doctor (Dr Enlander) which verify that this isn't psychosomatic, yet that's still not enough for people. For some reason because they haven't heard of M.E. I must be making it up. If I had cancer they wouldn't be telling me this.
    Yes, it would be easier to just not he around these people but I have no choice, I can't move out or get a job. So, is there any medical literature that is not 200 pages that would be useful in giving to "non- believers" to help my case?
  2. Raindrop

    Raindrop Senior Member

    Messages:
    124
    Likes:
    118
    USA
    Aerose,
    Thank you
    for giving me the opportunity to let people know about something extremely valuable that
    I recently came across. The International Consensus for Medical
    Practitioners on Adult and Pediatric ME
    . It was recently written (2012) with the goal in mind of getting
    a single international name for ME/CFS. But it goes far beyond that. It is absolutely incredible!!
    Very detailed on EVERY aspect of the disease. No one could EVER take a look at this
    and EVER get away non impressed!!!!
    So outstanding, that when I showed it to my General Practitioner she was so
    impressed that she wanted a full copy for herself and for other patients and possibly doctors. It is one
    of the best documents I have come across about EVERY aspect of how the disease impacts
    the various systems in our body and it goes VERY far to validate this disease.
    The only problem is that is is more than a few pages. But I plan to take this
    document to my various practitioners so that when I am having say a cardiac problem,
    then I can turn to the "cardiac" section......or section on neurosensory or motor or neurocognitive
    or pain, or any symptom that you have and it is just SO well organized and explicit!!! It also has a major section with
    treatment recommendations as well as research. Maybe you can download or look up the link to this and
    select a portion of it to print or show whoever at a particular time. Let me give this
    out to everyone who has not already viewed it, since for me this is the best "Bible" of
    ME information to refer to:
    http://www.cfs-ireland.com/ICC primer.pdf

    I would really appreciate hearing from you and others after they have pulled up this link because
    I plan to use it as my new "armor". I may eventually give it to my family who have
    never believed I have a true debilitating illness. Or whoever else. I am wondering if other
    people are impressed as I and my Primary Physician are. Please let me know.
    Valentijn and SickOfSickness like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    There are tests that show abnormalities but they aren't specific for just cfs/ me but also other illnesses.

    Natural killer cell function seems to be our best lab abnormality but not 100% specific to cfsme. It can explain why we seem to get certain infections. Just have to Google what nk cells do.
  4. alex3619

    alex3619 Senior Member

    Messages:
    7,188
    Likes:
    11,260
    Logan, Queensland, Australia
    There is so much material showing the physical nature of our disease, that if you were to dump it all on the heads of people I think you could crush maybe twenty or thirty disbelieving doctors.

    However, none of it is simple, none of it has been fully investigated, and little of it is known by most doctors.

    For your own review, not to show others, look at the medical section of Magical Medicine, just avoid the politics in that unless you want to read it. http://www.investinme.org/Documents/Library/magical-medicine.pdf

    Since this was written (2009?) a lot has been discovered. We are learning more all the time.

    There is one abnormality that seems to be unique. Its about six years old now, but is based on work that is maybe fifteen years old. You can read about it here: http://www.workwellfoundation.org/

    The 2 day cardio-pulmonary exercise testing, or 2 day CPET, can show a massive crash in physical capacity the day after we exert ourselves. No other diseases does that, including MS, at least that we know of. It was so strange that the first time they saw it in the test they thought the machine was broken.

    Not everyone has this who is diagnosed with CFS, or vice versa, but currently it looks like everyone with ME might. So we need further research.

    Several potential biochemical biomarkers are being looked at, including NK cell function and NK cell subtypes. New research on these is periodically published.

    For a good book on what is wrong with psychosomatic medicine, but its an academic book and will take a while to read so is only really for you, is here: http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952
    MeSci and snowathlete like this.
  5. Raindrop

    Raindrop Senior Member

    Messages:
    124
    Likes:
    118
    USA
    I have no idea why the above posting didn't come through with notification on this thread (at least to my email)
    so I thought I would re-send. I want to be sure people know about this resource I am mentioning below. I really
    hope it can help many of us with the lack of validation we receive.

    Thank you for giving me the opportunity to let people know about something extremely valuable that
    I recently came across. The International Consensus for Medical
    Practitioners on Adult and Pediatric ME
    . It was recently written (2012) with the goal in mind of getting
    a single international name for ME/CFS. But it goes far beyond that. It is absolutely incredible!!
    Very detailed on EVERY aspect of the disease. No one could EVER take a look at this
    and EVER get away non impressed!!!!
    So outstanding, that when I showed it to my General Practitioner she was so
    impressed that she wanted a full copy for herself and for other patients and possibly doctors. It is one
    of the best documents I have come across about EVERY aspect of how the disease impacts
    the various systems in our body and it goes VERY far to validate this disease.
    The only problem is that is is more than a few pages. But I plan to take this
    document to my various practitioners so that when I am having say a cardiac problem,
    then I can turn to the "cardiac" section......or section on neurosensory or motor or neurocognitive
    or pain, or any symptom that you have and it is just SO well organized and explicit!!! It also has a major section with
    treatment recommendations as well as research. Maybe you can download or look up the link to this and
    select a portion of it to print or show whoever at a particular time. Let me give this
    out to everyone who has not already viewed it, since for me this is the best "Bible" of
    ME information to refer to:
    http://www.cfs-ireland.com/ICC primer.pdf

    Appreciate knowing if others feel this "Primer" will be helpful to them as well.
    Ember likes this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,188
    Likes:
    11,260
    Logan, Queensland, Australia
    The problem with the ICC is that many have looked at it and thrown it in the wastebasket. A simple review and definition does not have the power to break through decades of ignorance, bias and dogma. Its a necessary step in research development, but its hard to make mainstream docs take it seriously.

    The current battle is to try to get the preceding definition accepted, the CCC. There are lots of current threads on this, mostly in advocacy as it involves Institute of Medicine (IOM) politics.

    I like the ICC. Its the best we have. Its just not enough.
    SOC likes this.
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,116
    Likes:
    1,665
    Somewhere near Glasgow, Scotland
    Personally, it doesn't get any more definite, than the legal standard set by Sophia Mirza's death certificate, an official UK item, which sets a legal precedent.

    YOU CANNOT HAVE DIRECT, ORGANIC DEATH FROM A PSYCHOLOGICAL PROBLEM!
    IT IS IMPOSSIBLE!


    Indirect harm from a psychological problem, such as say, depression/anxiety leading to alcoholism or other addiction/problem behaviour that then causes organic death by the those specific, well known effects, or, by suicide, is something completely different, but it's indirect.

    And Sophia's death certificate highlights what has been shown in ME autopsies and research for decades: peculiar inflammation and damage to deep parts of the brain (dorsal root ganglionitis)

    I have had low blood sugar for extended period and meningitis, I am very acquainted with how such inflammation of the nervous system/brain can cause stimulus to become unbearably painful, making you irritable, terrible headaches, dizziness etc. ME/CFS is very similar to those kind of effects.
    That isn't some w*nker spouting drivel to make his puffed-up ego and megabucks pay seem "valid", this is the personal experience of a patient, not a SHMUCK!
    They ignore this because they are "priests of the False God of Psychiatry and the Medical Establishment".
    They aren't physicians or healers, they are a damn cult!
    It dovetails neatly in the NeoLiberal Corporate Fascism that is corrupting our world today, and thus, is acceptable to the foul swine who have taken over corporations, medical health insurance companies and welfare systems.

    Ergo, whatever else is going on with our illness, the "inputs" to the brain from the senses, pain, sound, light etc, are being "tuned to maximum overdrive".
    This speaks highly and logically of inflammation of the brain and is VERY dangerous, that kind of effect is usually associated with extremely lethal or awful diseases.

    "IF ME/CFS kills, then Wessely et all are stupid gits!"

    [​IMG]

    oh and anyone who doesn't agree witht he politics: ATOS, the company that took over UK disability welfare examsinations, that denied I'm at all sick in any way, has been found out to have been avoiding paying ANY corporate tax int he UK, yet form UK government contracts alone it has received £2 billion!

    These swine wouldn't care if vaccines maimed hundreds of thousands, if pesticides caused cancer, or anything else that may or many not affect people, as long as the Establishment wants them to cover it up and make the problem go away, regardless of facts, so they will fund the psychologist charlatans, they will ensure honest researchers are drowned out and deprived of funding.
    See the Agent Orange scandal as 100% pure proof of this.

    My anger at this goes all way to even before my birth, when a psychiatrist futard told my mum that her excruciating pain was just "neurasthenia": all in her head. (*)
    No, it wasn't, it was arachnoyditis, scarring ont he spinal cord probably caused by a toxic X-ray fluorescent dye that the British government and Medical Establishment bloody KNEW was seriously harmful, that could leave folk paraplegic.
    That stuff wans't banned until the 1980s and then, they sold it off to Africa, cause they dont' give a damn if "insert racist nasty name for non-whites from Colonial era in this slot" or similar sub-humans like, the Working Class folk, get maimed, suffer and die.

    (note, I am not being racist, I am saying that THEY are, I know how they think and the language they use behind closed doors.
    if you aren't white, from SE England or from right education like Eton, Cambridge etc, then to them you are "sub human".)


    may God curse the swine to learn the true meaning of compassion! :/

    (*)You know, women, all their pains and woes are in their head because they have a vagina and a womb and are hysterical!
    *he says dripping sarcasm like napalm*
    What bollocks! Mum was the toughest bugger I've ever know and a true healer.
    Things she saw and stopped doctors doing was unbelievable, like one of 'em letting air bubbles move down the IV tube in plain sight into my aunt's arm (she was just a kid at the time), so Mum went ballistic, shouting at them if they enjoyed playing Nazi concentration camp games, seeing how much air it took to get rid of "untermensch" .
    Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!

    [​IMG]
    Last edited: Nov 13, 2013
    Dmitri likes this.
  8. Beyond

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

    Messages:
    923
    Likes:
    514
    Murcia, Spain
    It all depends where you live and who you speak to. There are some that no matter how much papers or links from the Internet you draw will keep saying you are lazy or psychosomatic. I have pretty much given up convincing people, I focus on healing and then they will see. EVEN if you went to some of the top specialists in ME/CFS these tougheads would be capable of dismissing them as charlatans, especially if they don´t help you.

    In spanish we have a saying that goes like this "Dead the dog the rabies end" Which means, that once you cure/improve they will see that you were actually ill comparing with how you looked and functioned in the past.
    Last edited: Nov 13, 2013
    helen1 likes this.
  9. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    Beyond is right.

    Many of us have posted about family, close friends, coworkers, etc not believing us. It is rare for them to change their mind.

    It has happened (I remember a success post from a couple months ago) but for every one who changes their mind, there are many of us very crushed because they refused to consider the strong evidence. Often, people won't even read a few paragraphs if we plead.

    See the cutting ties with family thread, for examples of the abuse given by families :(
    heapsreal and Raindrop like this.
  10. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    To say it another way, most people with invisible illnesses go through the criticism and disbelief, and we feel a need to be validated.

    Unfortunately people are so hard headed that they probably will not understand no matter how much they read (and many are not willing to try and read). And you can feel more crushed after trying to educate them.

    May be worth a try.

    But we do survive this huge betrayal, and you can rant and get support here on the forum.

    And it is great to have even one or two who believe you.
  11. Beyond

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

    Messages:
    923
    Likes:
    514
    Murcia, Spain
    To further clarify my point too... Even if you get tested and TONS of stuff get back imbalanced/defficient/worrying (which if they do the proper testing WILL be there because our problems are 100% physical and they leave MANY detectable markers in urine,saliva, stools or blood) that WILL NOT serve to most of people. And they base that hurtful position on the fact that still most of doctors think this disease (and related disorders) are either INVENTED or PSYCHOSOMATIC.

    For this majority of people which I like to call the brainwashed sheeple you will need a white-coated doctor, preferibly a bunch of them and at the end the whole medical community to say to them that this illness is real and physically-caused if you want them to be to you as supportive and nice as they would be with a cancer patient.

    Sadly, this majority is also a majority in our family and social circles. It is devastating and sad but you know, being ill all your life is your problem, not theirs. So we better cure, and that is in what I use all my waking hours (I also dream about it).
    MeSci and Raindrop like this.
  12. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    I know people with other illnesses where an M.D. spoke to their family, trying to get them to believe, and the family will not. They would rather think the doctor is wrong.
    Raindrop likes this.
  13. Raindrop

    Raindrop Senior Member

    Messages:
    124
    Likes:
    118
    USA
    I think that in my particular case, this would probably hold true. That is, family members still holding onto
    false beliefs. Very, very sadly, some people and especially family members have "investments" in their
    position that this illness is not as devastating as it really is. This is because to fully honor the truth would hold
    implications for them to be more compassionate and **responsible**. Responsibility would mean that
    they may have to help financially and practically - to lend a hand to help with things such as everyday assistance
    and with the many ways many of us desperately need help in our lives.
    Valentijn likes this.
  14. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    I agree with you completely, Raindrop. The problem for the ME Primer has been with its distribution.
  15. Raindrop

    Raindrop Senior Member

    Messages:
    124
    Likes:
    118
    USA
    Ember,
    Thanks. What's the story regarding the ME Primer's problems with distribution? That is so sad!!
    Do you know if it reached many patients OR physicians??
  16. Goodness to M.E.

    Goodness to M.E.

    Messages:
    50
    Likes:
    81
    Adelaide
    The ICC primer and The Hummingbird Foundation by Jodie Bassett are the most informative on M.E. to my knowledge.
    Just for the record:
    in Australia, the WHO-IDC-10 M.E. is classified as G93.3 (disease of the nervous system)
    CFS is classified as F48.0 (Neurasthenia)
    THERE IS NO SUCH DISEASE OR CLASSIFICATION FOR THE TERM ...ME/CFS... OR.... CFS/ME,
    it does not exist, there is no such illness. The problem is whilst the term me/cfs is continually used, people will continue to believe that M.E. and cfs( a wastebasket diagnosis, or lazy doctors diagnosis regarding, 'unexplained fatigue') is an illness all in the head and can be fixed by exercise and anti-depressants.
    If you had cancer, one would not call it 'cancer fatigue syndrome' nor would you have to wait and suffer for 6 months prior to being diagnosed, how stupid is that!
    We as suffers, must stop adding to this confusion and call our disease M.E. if that is what you have.
    We may have M.E. but that does not render us stupid or uneducated.
    The problem is doctors are not being educated about M.E. and now that has become our work.

    My response to doctors in the past about CFS, where is your proof that this is what I have and not something else you have missed or overlooked?
  17. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268
    I swear one of these days I'm going to write a book titled; "But You Don't Look Sick"
  18. Goodness to M.E.

    Goodness to M.E.

    Messages:
    50
    Likes:
    81
    Adelaide
    There are some great books to read and like many it can take months to read just 1 but here they are:

    'How to be sick' - Toni Bernhard
    'You dont look sick' - Living well with invisible chronic illness - Joy H Selak, Steven S Overman, MD
    Care for someone with severe Myalgic Encephalomyelitis - Greg Crowhurst
    What is M.E.? - HFME Booklet - Jodi Bassett, forward by Dr Byron Hyde
    Caring for the M.E. Patient - HFME, Jodi Bassett, forward by Dr Byron Hyde
  19. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    There is http://www.butyoudontlooksick.com/ by Christine who is the one with the "spoon theory".
  20. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    No, the ME Primer hasn't yet reached many patients or physicians. The problem with its distribution lies in the politics. The initiative for and development of the ICC was done outside any organization without any financial or other assistance or sponsorship. But the IACFS/ME decided to produce and promote their ME/CFS Primer at the same time using the older CCC. If you visit the IACFS/ME website, you won't find any mention of the ME Primer there. You won't even find the ICC on their list of case definitions.

    In hard copy, the ME Primer is available only through Invest in ME, as far as I know, although Marj van de Sande can also be contacted regarding reprinting. It's also freely available to download online. As you know, it's is veritable a treasure trove of current information, so I'm sorry that you (and others) couldn't have found it earlier.
    Last edited: Nov 13, 2013
    Raindrop likes this.

See more popular forum discussions.

Share This Page