1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Am I invisible ?

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

  1. taniaaust1

    taniaaust1 Senior Member

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    The faster you get rid of this belief that you can just push throu it and hence accept the reality of it, the better as that false belief often leads to the worsening of this condition and that is something you certainly do not want happening.

    Any exercise which has you in a lower health state the next day... certainly was over done. Work out how much you can do.. without there being negative impacts as lowering your health state thou your exercising, isnt healthy.

    Exercise in a healthy person increases oxygen, blood flow etc but often is doing the opposite in a CFS/ME person. Instead of feeding cells, they are being starved.
  2. taniaaust1

    taniaaust1 Senior Member

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    I personally believe those who have CFS/ME should be able to use euthanasia as long as it isnt depression which is influencing their decision. After all there is no cure for it, nor does it appear to me that their may be one in the near future.

    If based on rational.. why not.. someone can rationalise their situation and decide its far harder to live then to die and quite possible they want to get out of the hell living causes.. My state may be setting up an euthanasia advice clinic soon (in which people will be recommended the best ways to do it).

    Would i myself use euthanasia?... quite possibly as Im so so sick of my life being hugely impacted by those who dont understand my illnesses and hence this has made my life so unfair and hard. Im currently facing the situation where I could go to jail due to unfairness and the lack of understanding and compassion for those with chronic serious illnesses. Do I deserve that? nope i dont... I'd have far more peace if I wasnt living this life on this planet so yeah, euthanasia should be a choice i can make to get away from here. Im currently in a world where society in general dont understand me, I dont fit in here. There is no fix for this, society isnt going to change over night and suddenly start truely caring about people.

    (If you live somewhere you hate.. what do you do.. you move house... I dont see euthanasia as any different then moving house due to my religious beliefs.. my decision wouldnt be based on depression but rather on wanting to get away from the cruelity of people).
    ...........

    What is moral and what isnt, can only be based on a persons own belief system and no other can truely tell you what is moral or not.
  3. SaveMe

    SaveMe *****

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    Hey Taniaaust,
    I know--- its sad I even think of these things, but its true. Sometimes I wonder how much longer will this affect my life? After given repeated Hep B vaccines, I developed ME. It has taken a healthy, smart teen in his youth and turned him into a vegetable. and thats putting it lightly. sometimes i ask what good am I to society? My brain has been altered, I dont feel like the same person people know me as. However, I do have hope. I see a me-cfs specialist soon w. tilt test and blood work, so im excited. Im Christian, so its out of the question for me. But you are a very helpful person and no body wants to lose you.
  4. Cloud

    Cloud Guest

    The Hep B vaccine was my trigger too. Not an uncommon story.....I believe it is by far the most common vaccine known to trigger disease. Dr Hyde and Dr Shepard to name a few have done studies on this.
  5. kurt

    kurt Senior Member

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    Here is a comment about the anger at the CFS trigger. There is more to CFS than whatever triggered it. There are many known triggers for ME/CFS. For some of us it is a severe flu-like illness, for others a major life stress or accident, for some a tick bite, and for some it is vaccinations. The major factor behind CFS is probably already present before the triggering event, I believe the trigger just adds enough immune, detox, or adrenal stress to push us over the edge and into CFS.

    I think the sooner we recognize that it is not the trigger alone causing our CFS, the sooner we will be open to other issues and preconditions we may not be aware of that have to be solved in our personal cases. We may need a new 'Body Ecology' type diet to help with broken digestion, or methylation support, energy envelope management, antivirals, better stress management skills, etc.

    When you first realize you really do have CFS, that can be a depressing moment. However, some of us have partly or even mostly recovered. Others not so lucky have hung in there for many years, some for many decades. Why do we hang on? Because we find a way to make this life worth living.

    And we keep hope alive. I believe this disease is going to be solved, hopefully well within our lifetimes. There are many clues out there right now in emerging research. The answers are coming, slowly but surely.

    Keep hope alive!
  6. Victoria

    Victoria Senior Member

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    I'm really sorry to hear your anger & frustration, Saveme.

    It takes time to get over this phase & many sufferers never get over their anger & despair, especially if they're as young as you.

    I urge you to rest & approach your illness with a little more calm. Stress takes a big chunk out of your body's natural ability to manage your symptoms & fight infections - bacterial, viral or fungal.

    There are some members on this forum who are extremely knowledgable & well versed in the current research & the broad variety of treatments - Orthodox & Alternative.

    But one has to remember that there are a broad range of triggers, symptoms & co-existing health issues amongst us. Every human being is unique & I know there is no One size fits All approach to ME/CFS/FM.

    May I suggest you spend a little time exploring some more articles, threads & posts so that you have a broader understanding of the variety of patients who are members on PR & how their chronic illnesses have affected them. I know you'll find the vast amount of knowledge & experience a rewarding & helpful addition to your own research.
  7. sickness

    sickness

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    I think people are asking for the source of your information (a reference, for example) and whether that source is reliable.

    There are plenty of people here who have been researching this illness longer than you've been alive, and most of the people here have been sick much longer than you, so have done a lot of reading/research you haven't even begun to dig into. Like it or not, most people here know a lot more about this illness than you do at the moment.

    The CDC is not a reliable source of information on ME/CFS. You don't have to believe us now -- do some serious digging, read the research papers, read the CCC, read the NICE guidelines if you really want to believe in government resources. They you can decide who to believe and who to be more skeptical about.

    Plenty of men get this illness, and many young people. If you listen to people here, you will soon become aware of that fact. My daughter, for example, is younger than you and has had this illness for almost 7 years. She is learning to cope with this illness and so can you. None of us like having ME/CFS and all of us want a cure or better treatment, but until the time comes when that is available, we all have to find ways of coping.[/QUOTE]

    Well said Sickofcfs,

    Since I had to stop working in the job I loved, I have been researching everything I can find that has been written about ME/CFS. That's nearly every day for the last 6 years. I don't think there has been a study, guideline, definition, comment, article or argument written that I haven't read. I am part of several forums, many groups and (e)mailing lists. Like most people with this horrible disease my 'job' is to get better, so I try to keep as informed and educated as much as humanly possible.

    I agree that the CDC is not a reliable source of information, and frankly I think it is a bit niave to think it is. By the way, this is not beacuse I am Australian, but because I recognize that they do not use an accurate definition of ME/CFS. As can be said for the governmental health agencies in most countries around the world. Until they get their definition right, most of their information is useless because it isn't about real ME/CFS.

    And FYI I was 24 when I got sick, 15 years ago.

    take care, ness
  8. SaveMe

    SaveMe *****

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    Cloud,
    how did you know it was the vaccines? The reason I ask is because usually Hep B comes in a series of 3 shots and usually all given at a young age <12 years old. You see, a nurse practitioner didn't look at my vaccination record before doing an entirely new set of hep B vaccines. Thats right, I have been immunized with 6 Hep B Vaccines. Immediately after these, I started having the brain fog and fatigue, and then I noticed other things down the road.

    The vaccines that they shot into me were free of mercury (thimerosal) because they took that out years ago at the publics request. Thing is, why should Mercury be in the vaccines to begin with? Its similar to asking why do big commercial farmers spray pesticides on food? MONEY! And there is a conspiracy about a plan to depopulate the human race via vaccines, im not sure I believe that though.

    Why is Obama being the role model in this pic? http://news.discovery.com/human/president-obama-gets-his-h1n1-shot.html
    when he never got his daughters vaccinated against swine flu ?

    And why don't we hear about the swine flu Pandemic on tv anymore?

    http://www.youtube.com/watch?v=wjMHnBcRysc

    This young healthy girl got ME after a vaccine too. Plus all the reports of me-cfs/fm on VAERS (Vaccine adverse reaction database)
    I was touched when she said "Im too broken, you cant fix me anymore"

    Imagine being imprisoned inside the miserable existence that is your life.

    I don’t have to imagine of that. My body and mind is broken. I am so desperate to end the never-ending carousel of pain and sickness and suffering. I love my family. I have nothing left and I am spent.

    Im sorry, but this is the truth (in my case) and I understand vaccines don't result in ME for all people. That would be like saying all people who are exposed to a particular env. factor end up with MS.





    And you are correct about the research showing the association.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1488229/pdf/cmaj00290-0039.pdf
    Even if you go to the WHO and type in "CFS" in the main search, the first hit is "Hepatitis B vaccination and chronic fatigue syndrome"
    The Committee considered the possible association between hepatitis B vaccination and chronic fatigue syndrome that had been reported in Canada.
  9. dannybex

    dannybex Senior Member

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    Ditto...

    And in some cases, perhaps all of the above. Add to that list, pesticide exposures, heavy metal toxicities, fungicides, plastics and other chemicals, chemicals in our food and water...etc.

    Totally agree Kurt. (And I'm still in deep crash mode, down 20% from last year's 40%, but still I feel optimistic at some deep level, and am just beginning to take a second look at re-starting methylation, but this time very specific b12's, folates, etc.)

    And at some subconcious level, even during severe crashes, I think we have a feeling that we're learning more and more each day...the pieces of the puzzle, which may be different for each of us...are nevertheless coming together, even despite financial hardship, and other obstacles.

    Definitely keep hope alive!

    Dan
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    That's not really accurate, although it is true say that there are more types of AI diseases in which females show higher incidences of being affected than males, males are more likely to suffer from some types of AI - notably Type1 diabetes. One possibility for male/female differences in those AI diseases that develop after early childood is lifestyle, it is notable that AI is more prevalent in the developed world where environmental exposures can vary significantly between males and females based around childood play, adolescent levels of activity, employment types and cosmetic practices. http://www.ncbi.nlm.nih.gov/pubmed/19747114

    IVI
  11. Victoria

    Victoria Senior Member

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    For what it's worth, I think females figure higher in the research & statistics because females are more likely to report their health symptoms. Females have always been able to discuss their issues with friends, family & doctors.

    Generally, and I believe it still happens today, men tend to keep things to themselves, afraid of being seen weak or unmanly.

    I'm sorry to say, I'm not sure whether to believe any statistics at all because I don't know how the statisticians arrived at their results. Did they only include people who WANTED to participate or did they get a broad range of participants at random.

    In general (& guys don't bit my head off), females are more in tune with their bodies. They notice things more. They're more intuitive.

    Males usually have to get very sick indeed before they go to a doctor. A woman is likely to have a longer relationship with her GP, possibly starting around puberty or when they beccome sexually active & seeks birth control. Then after marriage, having children might concentrate that connection with their doctors. All in all, I suspect females are more likely to research & seek answers earlier in their illness.

    I think one would have to do a random selection of equal numbers of males & females (healthy or sick), to ascertain the statistics of ME/CFS sufferers.

    How many people are misdiagnosed too. Many patients might think they have something entirely different to ME/CFS.

    After all CFS & FM are syndromes, ie a collection of symptoms. I've been in pain of various sorts (mainly my back) since 1980. But after various treatments & therapists, it was only 2006 that I was diagnosed with Fibromyalgia. So for 20+ years I thought I had something else. I never would have answered a public advert. for volunteers or participants in trials or treatment for Fibromyalgia because I didn't know I had it.

    But I DID go to a chiropractor within a week of contracting severe enexplained back pain. If I was a man, perhaps I would have put up with the pain or ignored the pain for quite some time.
  12. SaveMe

    SaveMe *****

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    do you speculate cfs-me is autoimmune?
  13. SaveMe

    SaveMe *****

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    I think that is true-- women are more conscientious of their body and how it functions. Some sites say that CFS and FM occur more in women, but go on to say the statistics may be off because men are less likely to report symptoms. But men are less likely to report symptoms across the board, so wouldnt all gender related discussion statistics be wrong for all diseases?
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    While I would agree with that from my own frame of reference, though I think we have to be very cautious about making over arching statements across cultural and social boundaries, I've no evidence to back it up but I suspect that there are parts of the world where this gender difference is reversed and males get substantially more medical attention than do women, and indeed there may be countries where there is no measurable difference at all.

    The only large US study depended upon questionaire responses: http://www.cdc.gov/cfs/publications/surveillance_studies/prevalence_ks.html. A UK study which was based on actual diagnosis as recorded by GPs (diagnosis could have been by GP or Specialist) covers 1991 -2001 and predates the current NHS diagnositic guidlines , at a time when there was significant confusion amongst UK GPs as to what CFS/M.E actualy meant. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079668/?tool=pmcentrez Figure 3 of that report is interesting because it covers incidence (i.e the rate at which new cases are recognised), so while it shows that there was (1991 - 2001) a high level of new diagnoses in the 40 - 65 age range compared the 15 - 40 range, this doesn't say anything about how long people had been ill prior to diagnosis - something which is significant in M.E/CFS. This UK study (Table 2) gives a female to male ratio of 5/2 for CFS, 2/1 for PVFS and Debility/asthenia and 4/1 for Fibromyalgia - the mean age for diagnosis is 39 for CFS and 48 for Fibromyalgia.

    I think this a very important observation. There is also an issue about doctors' expectations of women as 'carers' and the cnsequent need to support women as the agencies of 'family health' in a way that is less applied to men, there may be very good reasons doctors t have those expectations but where diagnosis is based on flimsy grounds these non medical differences can impact upon statistics.

    IVI
  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don't speculate very much at all. I certainly do not ascribe to a 'single cause' view of M.E/CFS, and my guess is that there are multiple predisposing factors and multiple agencies involved, across patient groups, and maybe even in individuals. There certainly appear to be associations between autoimmune illness and M.E/CFS but co-incidence does not = (common) cause. I would guess that genetics is important to susceptibility in both autoimmune illness and M.E/CFS and it may well be that particular genetic variations lay behind autoimmune illness and M.E/CFS susceptibility in a given individual. However while I can give no sound argument for there being any epigenic involvement, I do find some the ideas about epigenetics appealing as potential parts of the M.E/CFS jigsaw(s)

    IVI
  16. Cloud

    Cloud Guest

    Kurt, I agree. There is a big difference between "trigger and cause", and for myself, I have not confused the two. Obviously ME/CFS can have several different triggers that are basically aggravating the real problem. But focusing on triggers is important for the purpose of helping the at risk group (family, RV+,etc) avoid full on disease. Actually, I advise my daughter along these lines all the time. I am especially involved in their immunization safety for this very reason.


    SaveMe, I got the Hep B vaccine series in 1993 for my work as a Nurse. I got sick immediately after the second dose. I had no acute infections or other risk factors at the time....so, I deduced it was the vaccine. Same deductive reasoning one uses to claim an infectious, or any other type of trigger. But to clarify, I do not believe the vaccine "caused" the illness. It is more correct to say that it "triggered" something that was already there smoldering.

    I too researched like crazy in the beginning because there were no doctors who could help. I was very sick, and no one believed me. Researching and networking was not only a necessity to save my butt, but it also gave me some sense of empowerment. I recommend it for both reasons. I got through the worst of times by remembering what gave my life meaning. For me that has been mostly my girls. They are my joy. Even in that bed bound abyss, thoughts of being able to spend time with them again, kept me going. I also did my best to hang onto purpose. I couldn't work as a Nurse anymore, but I sure could call up people in need to talk over their recent losses or other struggles. This also got me out of myself and this self absorbing illness. I did this from bed for years. I also had to tap that place of self love because I don't want to hurt that person...I want to support him. It helps to have friends around who remind me of that person. These things are acting on my spirituality, and they saved me. Bottom line...as Kurt said, we find a way that makes life worth living.

    Stick around SaveMe....some great advice in this thread. I would also ask that if you are feeling despondent, get in here and talk about it. If you are feeling suicidal, please call your local crisis line immediately. We have a saying about people who commit suicide...."they killed the wrong person". Meaning that it was but a temporary state of mind that may have been completely different the next day. This may be especially true for you coming into this nightmare late in the game when we are closer than ever to seeing some real progress. I can see the finish line. Stick around.
  17. SaveMe

    SaveMe *****

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    thanks Cloud,
    yes its hard to not be upset and depressed about this illness. when you say girls, do you mean girlfriends? or like daughters ?
  18. Cloud

    Cloud Guest

    Daughter and Granddaughter. Marriage went away with everything else when I fell off into the abyss. No girlfriends possible in that level of severe illness....at least none in their right mind.
  19. SaveMe

    SaveMe *****

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    look at this FB http://www.facebook.com/pages/Chronic-Fatigue-is-B-U-L-L-S-H-I-T/177319702285191
    who has the time to do something like this?

    If you have a Facebook, please report this page (on the left side) so it can be taken down once in for all.

    They watched an ME-CFS video and said
    "fat/lazy (check)
    no makeup (check)
    looooong winded story (check)
    self pity (check)
    lots of cats (to be determined)"


    "get off your ass"
  20. dannybex

    dannybex Senior Member

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