The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Another Trivializing Article - RGJ

Discussion in 'General ME/CFS News' started by ixchelkali, Apr 11, 2011.

  1. ixchelkali

    ixchelkali Senior Member

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    The Reno Gazette-Journal has another of those ghastly trivializing articles mixing up ME/CFS with chronic fatigue, ending with the chipper note "If you think you have it, get help and get back into life."

    It feels a bit like "Et tu, Brute?" because the RGJ has run some pretty good articles about ME/CFS in the past. I guess that's what happens when an author whose area of expertise is Bing Crosby tries to branch out into medical reporting.

    http://www.rgj.com/article/20110411...llenge?odyssey=mod|newswell|text|Local News|s
     
  2. ixchelkali

    ixchelkali Senior Member

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  3. Doogle

    Doogle Senior Member

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    It was a puff piece and except for the last sentence I didn't think it was too bad. It defined the criteria for ME/CFS and differentiated it from simple fatigue. It said if you think you have the condition, get help, which is good advice. As far as the ending, they don't want to dash hopes by saying if you get ME/CFS there is a high likelyhood you may be disabled for life. If persons get help early they are more likely to recover. The problem that wasn't mentioned is that most people can't find a doctor that has a clue. Maybe that will change in Reno once WPI starts seeing patients.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    Im actually not sure if a study has actually done on that comparing the amount of ones who got early help and recovered with the ones who didnt get early help and the recovery rate.

    One does hear that a lot.. but is there anything out there to actually back up this or is it something which has been just sprouted to us by the medical profession till we've started saying it ourselves?
     
  5. 5150

    5150 Senior Member

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    hi tania,

    personally speaking, with the virile subset that i have (are they being called "striations" now?), i won't recover until something amazing happens scientifically; and the right drug is found. It's a mean bugger to fight and to win.
     
  6. Doogle

    Doogle Senior Member

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    Good question. Here is a review from the Journal of Chronic Fatigue Syndrome and on page 33 it states, "Early diagnosis is important and may assist
    in lessening the impact of ME/CFS in some patients."

    And the study by Wessely that states, "Continuing to be active despite increasing fatigue may be a crucial step in the development of CFS."

    So my interpretation is that the earlier you get diagnosed, get the supportive treatment, and stop pushing yourself, the more likely to have a better recovery.
     
  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    There is a "contact us" link at the bottom of the page where one could send a polite note to the hosting site explaining why this is inappropriate. No log-in necessary, but you will need to give your email address in case the editor would like to send a note in reply.

    BTW, Dr. Melvin Ramsay said that by making a patient rest early on, it is sometimes possible to achieve recovery. I am unsure whether this represents a really good remission or actual full recovery, but either way it's a good thing and requires early diagnosis (by someone who actually knows what they are dong and would prescribe rest rahter than exercise, graded or otherwise), because our general tendency is to fight on through.
     
  8. Tulip

    Tulip Guest

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    Hmmm...I got diagnosed on the 6 month mark and rested rested rested. 19 years later i'm still very sick. I have come across heaps of other people like myself as well. Maybe the one's that recover in under 2 yrs, do so because they have post viral fatigue and not M.E.??.
     
  9. pine108kell

    pine108kell Senior Member

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    I always get irritated when I read how important it is to get an early diagnosis--yet there is no treatment for CFS. It makes it sound like there are many medical options that can stop the disease in its track which is totally untrue. Why so important for early diagnosis if no treatment?

    I was too sick to "push myself". I was bedridden. I was diagnosed very early with lots of tests, suggestions, etc. but most of it was worthless--even though it was very expensive. An early diagnosis did nothing for me because no one can treat this disease. The CFS diagnosis was not a comfort to me, as the suffering would have lasted less time with a terminal illness.
     
  10. Doogle

    Doogle Senior Member

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    But don't forget there is a lot of variation in the presentation. I went down steadily over 6 months until I was finally bedridden, exercising as hard as I could because I was told it would make me recover faster. I wish I would have known not to do that, maybe it would have turned out differently for me, I'll never know. Dr. Montoya is starting to give anti-virals at the onset of any acute virus like presentation. Hopefully he will make a difference using that strategy.
     
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I rested early on (without a diagnosis; just because pushing through hadn't worked so I tried resting) and got a fairly good remission (although was not, by any means, normal or able to lead a full life, but I wasn't stuck in my chair, either), but I did not stop being sick, and with later triggers I got worse again and am more disabled now again (i.e. stuck in my chair). One could suggest that I had PVFS then and ME now, but that doesn't meet the simplicity test (Occam's razor)
     
  12. cfidsurfer

    cfidsurfer

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    This article is pathetic

    and you can thank the CDC for puting out misinformation that feuls these types of ignorant articles. Thank the CDC for the Faduka definition (aka Reeves disease) also.
     
  13. Valb626

    Valb626

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    I, too, would like to know if there's any research evidence that an early diagnosis (dx) and extended rest make any difference! How "early" is early? It seems like 6 months of fatigue and other rotten symptoms isn't particularly "early," where the CDC definition requires that the "fatigue" symptom must last 6 months before a dx is assigned.

    It makes sense to me that bed rest and low exertion after a major insult are helpful in healing, especially when your body is telling you it wants to rest and especially if it's not letting you get out of bed anyway! But that thought isn't based on research, but rather what my mother told me I had to do to heal up. OTOH, hospital staff in the US make you get up and walk as soon as possible after surgery now because they say someone has found that it makes you recover sooner somehow (or else the health insurance companies have "sold" this idea so hospitals can't say patients should have longer stays because they can't get to the potty by themselves yet). Would extended rest work better for people with a viral onset but not surgical patients?

    And, as someone noted above, there is no "early" for people who can't point to an external insult, but simply get horribly sick one day for no apparent reason or others who have the awful gradual onset thing.

    In the absence of knowledge about any existing research literature here, I'm talking myself into concluding that early diagnosis and rest leading to recovery is b.s. And we don't have a good definition of "recovery" from ME/CFS either...
     
  14. Francelle

    Francelle Senior Member

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    That's sad Doogle! We do try to do what we can & these types of endeavours prove we are not malingerers.
     
  15. ixchelkali

    ixchelkali Senior Member

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    I think it's probably true that if you stop pushing yourself and start pacing early in your disease, you may be able to avoid a severe crash...until you catch a virus, or something. But some of this comes from the "psychosocial" model. That model basically says that you get a virus, push too hard too soon, feel worse, then you're afraid to try to exercise, etc, so you get deconditioned. In that model, if you get diagnosed early you won't be as deconditioned and you won't be as locked into your sickness ideation. Oh, and you're less likely to hook up with patient forums that will reinforce your delusion of having a physical illness.

    Remember the $6 million CDC/CFIDS Asso Spark! campaign? "Get informed, get diagnosed, get help." I kept thinking, well, I've managed two out of three. I came to really resent the print ads that said "Log on to www.cdc.gov/cfs for the latest research and guidance on CFS diagnosis and treatment. Your life is waiting for you, and so is the support you need." And what little was there was garbage, just more CBT and GET. Meanwhile, they're giving people the idea that we could get well if we really wanted to, and my friends are wondering why I don't get help instead of sitting around staying sick. Pah!
     
  16. Tulip

    Tulip Guest

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    Yes well everyone DOES get over CFS, but not ME. It all comes down to that, yet again :rolleyes:
     
  17. *GG*

    *GG* Senior Member

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    Perhaps people in Australia get over CFS or perhaps you mean CF? I find your statement offensive. Perhaps you are trying to say something I do not understand. Please clarify.

    GG
     
  18. Tulip

    Tulip Guest

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    It wasn't meant to be offensive, it was sarcasm. It's all in the history of the illness. What I am saying is that "CFS" does not exist, it is a made up term by the CDC to try to redefine the disease ME and ignore its numerous outbreaks, because they thought the outbreaks were hysteria, so of course they (CDC) think we can recover from it. Unfortunately we are stuck with now calling it ME/CFS until the name is changed or we and all the researchers and specialists stop saying CFS and use only ME.
     

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