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Unhappy again with SA ME/CFS society

Discussion in 'General ME/CFS News' started by taniaaust1, Sep 18, 2016.

  1. taniaaust1

    taniaaust1 Senior Member

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    I dont know what to do, I support my local ME/CFS society as I believe its the right thing to do but they keep publishing articles on their website which are working against ME/CFS advocacy and helping keep the false views on ME/CFS out there which is very harmful to those of us who have severe ME.

    eg in yesterdays news published on it http://sacfs.asn.au/ 16th Sept "UK ME Sufferer Ryan To Set Off On Mission To Prove Doubters Wrong"

    Ryan has managed his condition to the point he then goes and does marathons :( This article misleads that we can "manage our condition" by gradually building up exercise and things like this are just leading to those of us already suffering abuse due to the views out there already on our condition ending up getting more abuse cause people read this website.

    If I go to a new dr or get a new home support person or whatever and that person is after ME/CFS info, he can end up on their website and then guess who is told to try harder and gets treated shockingly (its things like this which are making me currently look into getting to the Switzerland clinic for assisted suicide, Im feeling like there is no hope of change for how Im being treated in the near future)

    Im already suffering much harm from the wrong views professionals have out there which Im dealing with and this website is further inflaming things. I should not be having to stress out on our states ME/CFS website having negative impacts upon me due to what messages its sending to those who deal with me.

    I have DisabilitySA and their physio ignoring how badly Im affected by ME (the physio wont even give approval so I could have my kitchen modified so I could use my wheelchair there) and Im having to take them to court for discrimination due to their wrong beliefs on this illness and you are posting things like this for them to read. Its highly upsetting to me.

    I beg that if anyone from the states ME/CFS society reads this to please, please, please stop putting stuff like this on our website which is doing the severe patient group in this state much harm. Seriously what hope have the very severe ME group got when this illness is downplayed time and time again on the website to the point people think we can exercise our way to good health.

    Our states ME/CFS website should be a place where any severe ME patient can send people to for more understanding on their condition, not something to be feared that people may read and which may lead to further abuse or neglect
     
    Last edited: Sep 18, 2016
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  2. skipskip30

    skipskip30 Senior Member

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    If they are causing more harm than good then I don't think you have any obligation to support your local ME/CFS group. I would personally be leaving ours if they posted an article like that.
     
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  3. Old Bones

    Old Bones Senior Member

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    @taniaaust1 I've taken a look at the link provided in your post, and can certainly understand your frustration with the quality of your local ME Society's website. With a few exceptions, it appears the content is chosen to appeal to those looking for the sensational human interest stories, and not the facts (although there are a few good articles). Not only that, the first thing that caught my attention while viewing the website on my iPad was a prominent banner advertisement for Viagra.

    The following appears just below the Viagra ad:

    "Please note:
    This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public."

    And, taking a look at the Disclaimer, it states:

    "Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee . . . ."

    So, I'm left wondering if the main goal of the website is not to disseminate accurate and helpful information, but rather to make money for the Society.

    Regardless, after reading Ryan's story, I'm left feeling somewhat concerned regarding the eventual course of his illness, assuming his diagnosis of ME was accurate. From what I understand, it is more common for young ME patients to recover than those who become ill as adults. Unfortunately, quite a few of them relapse in their 30's. This is so well known that ME researchers and specialists have assigned an average relapse age of 34 to this cohort. This matches my experience -- first ill at age 12, seemingly fully recovered a year later and healthy/active throughout my teens, 20's and early 30's, diagnosed with ME at age 34. So, although Ryan may have learned to manage his condition, it is also possible his ability to gradually build up his exercise coincided with a recovery that would have happened regardless of what he did. For Ryan's sake, I sincerely hope he retains his good health. But I agree -- this type of message isn't welcome for those of us who are still ill, despite our very best efforts.

    Have you considered contacting the Society to make your views known, as per their suggestion in the first "bolded" quote above?
     
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  4. JaimeS

    JaimeS Senior Member

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    I would send them information as well. We don't understand this illness well enough to get why 1 of 20 patients recover but 19 of 20 never do; and GET has been shown again and again to exacerbate the illness. Claiming recovery is related to GET is just nonsense.

    For those who are wondering, I'm quoting the Jason et al study that states that 5% of patients recover.

    @Old Bones I had no idea about the childhood vs adulthood relapse. That's very interesting, do you have a link to that data from someplace?

    -J
     
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  5. Old Bones

    Old Bones Senior Member

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    @JaimeS I've stumbled upon this fact numerous times over the years, but can't quickly find a reference. The last time I recall was while viewing a video -- a link to which was provided on the PR forum, perhaps sometime in the spring. I believe (but could be wrong) the speaker was Charles Lapp. I've tried to find it, with no luck. The video quality was extremely poor -- recorded on a cell phone, it seemed. Perhaps someone else remembers it.

    So far, the only somewhat-related research report I've been able to find is at:

    http://bmjopen.bmj.com/content/5/10/e008830.full

    It describes the "age peaks" of teens and 30's -- not exactly what I'm looking for.

    "The incidence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has two distinct age peaks, at 10–19 years and 30–39 years. . . . However, prognosis is much better in children than in adults, with 54–94% of children improving or making a complete recovery from the illness, compared with a recovery rate of not more than 22% in adults."
     
    Last edited: Sep 18, 2016
  6. JaimeS

    JaimeS Senior Member

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    Thank you @Old Bones !

    Interesting recovery figures -- one wonders how long they follow ppl. If you have ME or CFS at age 15 and they talk to you again at age 22 and you're fine, they probably leave you alone. They don't ask whether or not you're still all right at 35. I wonder how many relapse.

    Personally, I had a bad bout at about age 12. I remember describing exhaustion and air hunger to my physician at the time. He was even someone who knew about CFS; he was about as well-informed as a physician could be in those days. However, he said I was probably just out of shape when I explained that sometimes I had exhaustion and trouble breathing (I was not overweight at the time; no real reason to suspect this). I think he was not aware that any of this could happen to children. My 20s were largely free of any symptoms, and now here we are again, many times worse. I wonder how prevalent this is, and whether anyone like LJ is looking into this sort of thing.

    The recovery rate for adults that you cite is incredibly optimistic! It is from the BMJ.... oh, that's Crawley's. NM, I really don't trust her research creds...

    -J
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    I really do not understand why this is going on as there are many who run the society who are well aware of this illness and its facts.

    My thoughts on it are that it probably isnt about sensational human interest stories but rather just someone putting an article there every day or most days and not caring much about what it is, not caring at all about the quality or how it makes us appear.

    lol I didnt notice that. The society doesnt have a lot of money so I guess they are allowing ads to help pay for the website.

    I didnt notice any of that or the disclaimer. and yes I really wonder why they even would express views which wouldnt be the views of the committee or society or which wouldnt help people trying to understand this illness do so better. That makes no sense at all.

    And besides many who want to learn about the illness go there, they cant expected to know what is good info put there and what isnt and many people eg those professionals which do with me I'd think they are unlikely to go and investigate at the accuracy of what is put there. People expect info to be put at such sites to be mostly accurate anything else just doesnt make sense.

    Hasnt a society for an illness got a responsibility to make sure they are not being misleading and putting out poor info on the illness they represent?

    Im fairly sure they wouldnt be making money by their website or by putting up these articles.

    .....

    nods yeah. I had a remission too but I would never had put my remission down to exercising or pushing myself nor would I still be applying I had ME/CFS while doing marathons (I did a marathon while in remission but I certainly did not have ME/CFS when I did that). That's one of the reasons why this article would so confuse the general public peoples.

    nods yeah, that is if he had ME/CFS in the first place, as we know the english often define people with this who wouldnt fit the other definitions of it and may not even have the post exertional fatigue.

    "If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public."

    I take that quote to mean they mean put the complaints to the original article publisher and not meaning to express unhappiness to them republishing it there.

    [quote] So, I'm left wondering if the main goal of the website is not to disseminate accurate and helpful information, [/quote]

    what is the use of having a ME/CFS society if it isnt to support their patient group and be giving out accurate and helpful info. Im trying to get my head around why they wouldnt want to be doing this or not care about this. Its better to put out no info then put out harmful info on a group you are supposed to represent.
     
    Last edited: Sep 18, 2016
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  8. taniaaust1

    taniaaust1 Senior Member

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    I had a few year remission.
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    We recently lost our president, secretary and others of our state ME/CFS society due to illness. They also due to all this changed the running rules of the society eg made it so less people can be on the committee then was allowed previously (this did worry me though I could understand why they did that). Our state society is being run by only a handful of people, I hope that isnt negatively impacting the whole thing.
     
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  10. alex3619

    alex3619 Senior Member

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    This seems to be a common issue. Not enough people, too much to do, and those few people are sick.
     
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  11. Living Dead

    Living Dead Senior Member

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  12. Old Bones

    Old Bones Senior Member

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    @JaimeS I was incorrect in my earlier post that Charles Lapp was the doctor who mentioned recovered adolescent ME patients relapsing in their mid-30's. It was David Bell. Here's a link to the video of his presentation in California, December 2015:



    The segment that relates to this issue is very short -- starting at approximately the 41:30 mark.

    I also found the following link:
    http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/

    It states in the last two paragraphs:

    "One of the results of this paradox is that persons with ME/CFS, particularly adolescents, were felt to have a good prognosis. But overall, the prognosis is poor, 'Full recovery from untreated CFS is rare.'

    It also seems that after a period of improvement for some years, a decline in overall activity occurs. Forty year old adults who had an acute onset during their teenage years have the activity of seventy year old adults."
     
    Last edited: Sep 18, 2016
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  13. BruceInOz

    BruceInOz Senior Member

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    Just checked the BMJ article and the reference given for that 22% is PACE (Lancet 2011). Obviously they really meant the later recovery paper and we have a good idea how reliable that is!
     
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  14. taniaaust1

    taniaaust1 Senior Member

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  15. JaimeS

    JaimeS Senior Member

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    You're a marvel, @Old Bones -- thank you!
     

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