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No Longer Naive in the Ways of The Beast

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 5, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Some 'syndromes' do get taken seriously, such as AIDS and Down's Syndrome.

    Good post though, and Jody's of course!

    I am puzzled though about how and why governments are so often so blind to reality and fact. They seem to be taken in by powerful influences who have an agenda. This also happens in many other situations, such as parts of the food industry trying to hush up info about the dangers of their products, and a strong farming lobby in the UK being allowed to override scientific findings (often from government-commissioned, taxpayer-funded research!).

    So governments make policy decisions which are not based on the best evidence. How can this be fixed?

    EDIT - after a little thought I have realised that this is a huge topic and would really need its own thread!
    Last edited: May 7, 2014
    Jody and Izola like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Because we are mentally ill with delusions, and very clever with it so as to seem extremely logical and plausible, except to those brilliant psychs who have seen through our trickery...and it's virtually impossible to prove them wrong. :rolleyes:
  3. Liz

    Liz

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    And even when the solutions have not been found for this person or that one, for this symptom or that, we will continue to be there for each other. Even when all we can say is that it sucks, and that we are thinking of them, we are making a difference for each other.
    Well Said, Jody! This is a marvelous article because as patients we want with our whole hearts to heal, and failing that, we want to heal everybody else. We want there to be a reason why a treatment works, find a cure and move on ahead. It is an arduous journey to realize that the word "incurable" might after all be true. It's such an unsatisfactory truth -- I might have to endure this illness without really knowing how to help myself, or anyone else, get the elusive cure. But you're right -- we acknowledge one another and we endure. For now, that must be enough. Thank you!
    greebo likes this.
  4. Jody

    Jody Senior Member

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    Izola,

    Maybe not for eons, but... thank you.:)

    Attaboys are great ... money is too.:)
  5. Jody

    Jody Senior Member

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    SquidProQuo,

    Lovely words. Thanks:)
  6. Jody

    Jody Senior Member

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    MeSci,

    lol Yup, that about sums us up.:)
    xchocoholic, rosie26 and MeSci like this.
  7. Jody

    Jody Senior Member

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    Liz,

    Yes. At the very least we acknowlege each other, and that is no small thing. Especially since for so many of us, acknowledgement is so rare from the rest of the world, or even our families sometimes.

    Thanks:)
  8. Misfit Toy

    Misfit Toy Senior Member

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    Jody, thank you for pointing this out. I often feel like over the years, people will recommend something for me to try and if it doesn't work they are almost mad at me, or just don't get it. Everyone is different with a different chemical makeup, etc and I find it so hard to understand why people can't understand how they may be able to take something, but others can't take the very same thing.

    I recently did IVIG therapy and before that subQ. A woman mentioned how she really didn't get why I didn't like subQ..sticking 3 needles into myself (hurt like hell.) She could do it, so shouldn't I be able to and that basically I was taking a moment or time in my life as crisis and allowing it to basically color the new treatment in a bad way. I was having a lot of family problems and my mom's health was suffering and she felt that this could be impacting my treatment because basically I had a negative attitude. Her words via email hurt me and I couldn't believe this was coming from another ill person with CFS. Anyone who is sick themselves with an illness, working and then on top of that helping out an aging parent is going to be.....down and scared and especially with a new diagnosis of CVID and a treatment that is lifelong.

    I have realized that just because someone has CFS does not mean that person will get you, understand you, or validate your situation. That can be okay, providing they do not feel the need to hurt you by saying nasty things because you can't handle what they so easily can handle.

    Anyway, thank you for your compassion and may many who read this article pick up on that and feel the same way when others can't take, or handle what they so easily can. It's not about being negative, it's about a different body makeup.
    Jody and MeSci like this.
  9. Ema

    Ema Senior Member

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    Or maybe you just totally misread the situation and the person was actually really trying to help you through a hard time and you are so used to being let down by people that you just couldn't see it and reacted in a knee jerk negative fashion to sentiments given from a place of true compassion and understanding.

    She might have really understood how stressful everything you were going through was for you and how that definitely would impact your tolerance level for yet *more* stress - like the stress of starting IVIG with a doctor that was proving to be a bit clueless - and that you might want to take that into consideration before throwing away a treatment that might turn out to prove to have long term benefit.

    It's hard enough to honestly evaluate a difficult treatment like IVIG with so many confounding factors involved, like trying to take care of an ill parent. I think most of us here would agree that starting a difficult new treatment while under a great deal of stress might not be the best timing for a good trial of that treatment. And that deciding that it doesn't work in that same time period might also be short sighted.

    I know I personally never think another person can do or handle something just because I can, but I also know that sometimes a little encouragement goes a lot further when someone is starting out and discouraged, especially when they know that it is a long and bumpy road already. It's unfortunate if someone else takes that *encouragement* to go for it and keep trying to be "nasty" or "not understanding" and is very hurtful to the other person who is using her own limited energy trying to help a complete stranger as well.
    Valentijn likes this.
  10. Misfit Toy

    Misfit Toy Senior Member

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    "Or maybe you just totally misread the situation and the person was actually really trying to help you through a hard time and you are so used to being let down by people that you just couldn't see it and reacted in a knee jerk negative fashion to sentiments given from a place of true compassion and understanding."

    That's a lot of psychoanalyzing going on there Ema. Do you even know this person? Have you talked to them on the phone or is this just.....you sizing them up via....?????

    Not sure. But, since I am that person and I really don't like to be analyzed, I would have to say....nope. Not it.

    Too many opinions about a situation from someone who is not me and only has a bird's eye view. But I guess that's what happens when people study to be in psychology?

    They become psychologists.
    MeSci likes this.
  11. xchocoholic

    xchocoholic Senior Member

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    Great article @Jody.

    I visit PR to help deal with my feelings of isolation. When I became ill in 1990, the only articles I could find on "cfs" were at the library and I really didn't feel well enough to go. Having access to great info and fellow pwcs at my fingertips has lifted that burden. :)

    On a side note, I've found sharing what has helped me has been met with both gratitude and hostility. And sometimes in the same sentence. Lol. I know I react this way sometimes when people, even doctors, offer me advice so I get it.

    For me, the frustration of trying to comprehend what was said gets in the way of being polite. I've learned to accept that that person was just trying to help and silence would've meant they didn't care. Even if I don't remember to acknowledge this later.

    Tc .. x
    Last edited: May 9, 2014
  12. Jody

    Jody Senior Member

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    Xchocoholic

    When I got ill in 1992 we didn't have a computer let alone internet, and so I had nothing at all to work with. Even after we got online in the late 90s, and then the early 21st century (that sounds weird:) though I could find some articles, little of it was useful, most of it was written in jargon way over my head and most of it just scared the wits out of me.

    Actually, it wasn't until I found Cort Johnson's Phoenix Rising website (before he had started this forum I think) that I found much that was intelligible to me, and that had any relevance at all to my life.

    Things are still not what they should be but there is at least alot more on the net that is worth reading and that offers some benefit for us.

    Reactions can be complex and seemingly contradictory at times. Chalk it up to all of us having too much to deal with.
    MeSci and xchocoholic like this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sites like this, and the internet in general, may be saving many people from making the errors us long-termies made, so they may be able to avoid getting worse. I got ill in 1995 when the only advice I got was to exercise, and the only reactions I got were that there was nothing wrong with me, or that it was all in my mind, or all my fault. It was rarely explicit, but no one seemed to take it seriously or give me correct advice.

    Sadly this still seems to be the case for most people, at least from those in power, friends, family, doctors, etc.
  14. lookinglass

    lookinglass

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    I live in the Canary Islands, an autonomous region of Spain. My young Spanish GP whom I visited yesterday had never heard of the words Myalgic Encephalomyelitis, even though I wrote it down for her. But she knew about Chronic Fatigue which she kinda dismissed. Not a very hopeful encounter for me. It means I must look out for a Private Doctor.
  15. Jody

    Jody Senior Member

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    MeSci,

    In the early days, everything I did was wrong. I have learned everything that I have learned the hard way. Hopefully we can save the newbies to ME/CFS from going through as many years of doing the wrong things, and maybe they will only be briefly in ME/CFS land.

    And maybe eventually the good advice that has been helpful to at least some of us, and the basic good advice that works to some degree for all of us -- like get off your feet, sleep as much as you can, look to your diet for possible issues, etc. -- will be all over the internet, and will have pushed out and drowned out the really crappy advice we started out with back then.

    That's one of our aims, eh? Is to go from being voiceless and ignored, to being the voice of reason that is heard by people who are sick and stumbling around looking for help. Better they find us than the sources we all started out with years ago.
    MeSci likes this.
  16. Jody

    Jody Senior Member

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    Lookinglass,

    I'd love to visit Spain and the Canary Islands some day. But I can only imagine how difficult it is to live there with this illness.

    That wasn't a very promising encounter. It sounds very much like my experience with my doctor in Canada though. He was never any use to me. Thank goodness he has retired.

    Do you have naturopaths where you live? My personal experience with a naturopath has been fruitful, and nothing related to conventional medicine has ever done me any good.

    I think the majority of us don't get much help from doctors. Self-diagnosis, identifying our own symptoms and trying different things for them, is the path many of us are on. There are a lot of threads on Phoenix Rising that offer up information that might be of help to you.
  17. GcMAF Australia

    GcMAF Australia Senior Member

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    Thank you @Jody.
    I am in contact with many lyme sufferers, and they go through these difficulties.
    Even small improvements can be a major victory.
    and certainly the recognition of these diseases needs to be greatly improved, and the politics improved.
    There is a major project planned over the next 12 months or so in the US.
    Slowly, slowly we gain strength and get more medicos on our side.
    http://www.actionlyme.org/
    This is an All Groups Occupy: Chronic Fatigue, Autism Parents, Psych Rights advocates, Gulf War Illnesses, "Lyme Disease," Fibromyalgia

    I would go so far as to say anew approach is needed for all, including cancer, diabetes, cardiovascular people etc.
    Thank you all and regards
    Jody likes this.
  18. Leopardtail

    Leopardtail Senior Member

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    I got in 1975, no computer, no internet access outside universities
  19. meandthecat

    meandthecat

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    Hi Jody
    What has struck me from the beginning of this hideous journey is the implicit understanding that we have of each others pain.
    How is it that the similarities overwhelm the differences?
    Perhaps it is that we experience such diverse and confounding symptoms that we no longer buy into the simple picture painted by reductionist( poor) medical science.

    We all have experienced the helpful soul who 'Knows' how we feel, and has several suggestions as to how we could recover, when Knowing is an exercise of power. Yet the understanding which arises for me is based on Knowledge which doesn't belong to me and given the state of my mind may be just passing through.

    I work and one of the people I supervise has ME, I can tell how he is feeling at a glance, I know how it feels for me and guess it is the same for him; I 'witness' his experience and in that moment experience the profound chasm between us.

    I tell him about what helped me and share some pills but he is the captain of his own vessel.

    Coming down with ME stole a life, recovering meant building a new one, supporting someone through that territory is not what I would choose but not something I can turn away from.

    Is this the exercise of compassion.

    Compassion had been the core of my spiritual practice once long ago when the world seemed large enough to contain the ineffable. It shrank......but maybe I may find it again.

    forgive the ramblings of an old fool
    Izola, MeSci, rosie26 and 1 other person like this.
  20. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Beautiful written! Empathy would be nice also.

    GG
    Izola likes this.

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