Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

it makes me want to spit

Discussion in 'General ME/CFS News' started by Min, Jul 27, 2012.

  1. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    that whatever this woman has is diagnosed as myalgic encephalomyelitis, but maybe I am wrong:

    http://www.actionforme.org.uk/get-informed/news/your-news/jane-taking-part-in-olympic-ceremony

     
  2. elbosque

    elbosque

    Messages:
    52
    Likes:
    53
    That is an excellent story. We need more hopeful stories like this. The range of ME/CFS severity is quite extensive. I've gone from fully incapacitated to now working full time - but at my own scheduled/pace. To work full time really does depend on the type of job you have, the good will of your employer and a excellent care from health care professionals Although, my doctor does constantly warn me to better pace myself. I do tend to suffer from frequent mini-crashes of 2-5 days because I sometimes get over excited about doing something and overdo it.
     
    justy and TessDeco like this.
  3. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,947
    Likes:
    1,691
    Florida
    I don't get it. Will there also be people there with aids, ms, autism, diabetes, cancer, etc etc etc ?
    If so, why ?
     
  4. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    421
    Working full time + Regular rehearsals at nights or during weekends and holidays...
    Does it really sound like a person who has a reduction of more than 50% of activities (one of the necessary criteria if my memory serves me)?
    What next? Hussein Bold with a diagnosis of motor neurone disease?
     
    Valentijn, redrachel76 and Min like this.
  5. CJB

    CJB Senior Member

    Messages:
    833
    Likes:
    474
    I find it hopeful. If someone is properly diagnosed and treated, they can remain at a high level of functioning. It's the next best thing to a cure. Isn't that what we would all want at this stage of the game?
     
    L'engle, justy and elbosque like this.
  6. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    421
    Of course it is what we all want, but honestly, how many of us are properly diagnosed and treated? and how many that are properly diagnosed and treated remain at a high level of functioning?
    What this lady describes is not IMHO high-functioning-ME, it is super-high-functioning-ME-to-the-point-we-are-wondering-whether-this-is-still-ME.
     
    Valentijn, Wonko, redrachel76 and 2 others like this.
  7. elbosque

    elbosque

    Messages:
    52
    Likes:
    53
    Tito, I will not judge until I know the full story or hear from the person. I am just happy to hear that some people with ME/CFS are still participating and enjoying life. I try to do that as much as possible. Far too often us ME/CFS sufferers are too quickly judged by others. It should not come from those of us who know better.
     
    L'engle, justy and usedtobeperkytina like this.
  8. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    421
    You are right that we don't know the truth. We just have a news article. My opinion was not on what that lady can really do or not; my opinion is on how the situation is described, that is, the situation about a person who can obviously do many things and at the same time who is described as having ME. What I noticed is that the article is not written by her but by someone else. Does that someone else has done a good job in describing a situation? I doubt. It just does not sum up.
    I'm not blaming anyone with or without ME enjoying life. I'm just tired of reading these 'success stories' that in reality when you scratch the varnish are not. It just encourages people around us to tell us 'how come you're not cured? My neighbour drank horse milk every night for a week and now can run the marathon! Why don't you do the same? You like being ill or what?'
    You see what I mean Elbosque?
     
    beaker likes this.
  9. elbosque

    elbosque

    Messages:
    52
    Likes:
    53
    Yes, I see and know what you mean. I get it regularly from the people who know exactly what I have to do to be 'cured' from the ones who always say "you don't look sick" (or some version of that). I have developed a good coping tool - ignore them. But I do question anything that the media reports ( and not just on CFS).
     
  10. allyb

    allyb Senior Member

    Hi Min,
    Did you see the opening ceremony? I thought of you, all those hospital beds :eek: I could have taken part as a patient, I could manage the bed routine :rolleyes: and rehearsed at home in-situ :rofl: It would have a been bus-mans holiday;) and no doubt the bus would have crashed :confused: like me.
    I'm shattered just watching it; it was very energetic!! good though.
    allyb
     
    Min likes this.
  11. serg5

    serg5

    Messages:
    15
    Likes:
    24
    I don't understand how at this point it is even possible to be 'properly diagnosed'. And I also don't understand the antipathy on this forum to anyone who is ill and incapacipated and living a life of hell who doesn't quite fit a so-called diagnosis of 'm.e/cfs'. We are all in this together - maybe in twenty years some of us will be diagnosed with illness 'a' and others 'illness b' and others 'illness c,d etc'. The point is that the human body is unbelievably complex and we are all in this wastedump of people that the medical community has yet to find a 'diagnosis' for. So I don't see the triumph in an 'm.e' diangosis if that leaves a big chunk of us behind. The point surely is that we all have things 'wrong' going on in our bodies, that the medical community has yet to figure out a cause or cure (or diagnosis) for. Let's stick together please?
     
    PhoenixDown likes this.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    Studies show that 5% do recover. And recovery usually takes years. During that time, she may still have some limitations, but be making progress that is close to recovery.

    Dr. Bell said many of his patients had gotten to where they could work full time and thought they were recovered. But, they still had symptoms and were not truly recovered, he said. In other words, no way they could become a hiker. They had a more sedentary life which had to be done to live within their limitations. Because the limitations were fewer, they thought they had recovered.

    I question if Cher actually has the disease, because of her Las Vegas schedule. But a few years ago, she flew to Germany to get treatments.

    I think we all have to take people at their word and remember there is a range and a few do recover. Who would want to claim having this maligned disease if they really didn't?

    Tina
     
    justy likes this.
  13. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    421
    I see what you mean but I would not phrase it that way. I remember having seen studies where the authors concluded that around 50% of patients with a diagnosis of ME in fact did not have ME. It does not mean they were not ill, it means they had something else.
    Over time, I've also noticed the extraordinary level of denial ME patients experience. I've seen it in a sibling who was constantly saying how better and how close to recovery he was when I could see he was steadily deteriorating. It made me understand my own level of denial (super high). A ME patient would say, 'I can walk half a mile', but he never says, 'but you have to tell me in advance, I will tell you shortly before depending on if it's a good day or not, the heat, etc. and I also have to make sure nothing important is scheduled the week after because I have to accomodate for the subsequent crash, etc.'
    This is probably the biggest obstacle for the medical establishment to understand the severity and duration of this illness. If we take Alzeihmer patients for example, they also state that their memory problems are just mild when they are already completely dependent. It is only when they reach the final stage of their illness that relatives start to understand the true extent of the illness. For us, it is the same, except that the illness does not systematically evolve to the most severe stage. The doctors who really understand what a 'ME life' is are those who've had it personally or who have a close relative with it.
    I've now reached the conclusion that I personally do not believe ME patients when they talk about the way they feel. Not because I think they are liars but because our reality is so incredible and doom and gloom that the human spirit just cannot accept that, it must clutch at straws of hope and positive facts.
    One part of that very unsettling reality is the very fact that we cannot even describe how we feel on a bad day. I've never be able to find the appropriate words and sentences to express what it is. Just a simple thing, like the fact that we are constantly on our guards about a potential indication that a crash is coming; how many of us have ever mentioned that as an important aspect of our daily life? Has anybody ever seen that in an article on ME?
    I don't like research stating that 'patients reported feeling better'. It means nothing to me. I like research that says 'for 3 consecutive months, the patient could walk x miles, could work x hours a week as a ---, could do his shopping, could enjoy a social event every weekend for 6 hours standing up 50% of the time, etc.'
    I also do not like when doctors say 'up to 5% of patients do recover, so there is hope for you'. Does it mean that if am deserving enough I would be cured? And if I am not cured, is it because I do something wrong? And what about the 95% left behind? What is there for them? Is a recovery of 5% enough to limit further research onto this illness?
    What also puzzles me with the article is the parallel with the Olympic games. Does the author want to show us this lady's "performance/achievement" like the other athletes?
     
  14. SOC

    SOC Senior Member

    Messages:
    7,839
    Likes:
    16,544
    I can easily see both sides of this. My first reaction was, "Yeah, right, sure she has ME :rolleyes:." But then I realized that my daughter, who is in remission (more on that in a moment), probably could have pulled off participating as one of the nurses or doctors in that performance, and would have jumped at the opportunity.

    But what is remission? We don't consider her "cured". This summer, as she worked full-time as an engineering intern, we're getting glimpses of the cracks in her health. She works full-time, does the activities she wants on the weekends, exercises a little bit, doesn't feel sick and exhausted all the time.... but she's noticing the need to nap after work most days. She also needed to go back on Florinef this summer to keep her heart rate from going sky-high. I think she's more like one of Dr Bell's recovered, but not really recovered patients. We consider her to be a high-functioning person with ME/CFS. They do exist. I'm not sure we're ever completely rid of ME/CFS, but some people can get enough appropriate treatment to be... let's call it "fully functional".

    So, yes, "Jane" could have ME. But suggesting that just because she can do what she is doing today, every PWME could do the same is laughable. It's like suggesting that every person with cancer should be able to cycle like Lance Armstrong. :rolleyes: Not that the media, our healthcare providers and sometimes friends and family don't think like that sometimes. ;)

    OTOH, my cynicism (based on very little knowledge on the subject, lol) about ME/CFS treatment within the UK NHS does make me skeptical that "Jane" actually got any appropriate treatment for ME which makes a recovery from anything but the mildest ME seem unlikely.

    So, I sit here in cognitive dissonance and don't worry about it too much. ;)
     
    usedtobeperkytina, Valentijn and Tito like this.
  15. valentinelynx

    valentinelynx Senior Member

    Messages:
    643
    Likes:
    1,402
    Tucson
    I fit all the criteria for CCC and the newer International Consensus Criteria. Nonetheless, during a period of time of several years, I worked more than full time (up to 110 hour weeks, and not easy weeks, mind you) during my internship and residency. Every non-working minute was spent in collapse, I had no energy for "recreation" like my fellow residents who would run off skiing on weekends and such. Unfortunately, that period of 80% wellness ended nastily about 3 years ago, and I've been trying to climb out of the pit by my fingernails ever since. Would I be better off now if I'd not finished med school and residency? Who knows. Did I not have the illness during the years of relative recovery? Doesn't quite make sense to me: my symptoms were much the same, just to a lesser degree of disabling intensity.
     
    usedtobeperkytina likes this.

See more popular forum discussions.

Share This Page