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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I Have Chronic Fatigue Syndrome - Emma Blackery - YouTube Video

Discussion in 'General ME/CFS News' started by Bob, Jul 16, 2015.

  1. Bob

    Bob

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    I Have Chronic Fatigue Syndrome
    by Emma Blackery
    July 13th 2015

    www.youtube.com/watch?v=ELrn7Ov4H54




    I don't know who Emma Blackberry is, except that she has a very popular YouTube channel, with almost a million subscribers. And she seems like a nice person.

    She has recently been diagnosed with CFS after being ill for 6 years without knowing what was wrong. She had been blaming herself for being 'lazy', so is relieved to get a diagnosis.

    The video has already been watched more than 185,000 times. (Update: 210,000 times.)

    Quite a good portrayal, and explanation, I thought.
     
    Last edited: Jul 18, 2015
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  2. Valentijn

    Valentijn WE ARE KINA

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    ... "This ain't a fuckin' holiday!" :rofl:

    Anyhow, very interesting to see the reaction of someone on the same day they are diagnosed.
     
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  3. halcyon

    halcyon Senior Member

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    I fear she may have been misdiagnosed by her doctors. She says they diagnosed her with moderate CFS. The NICE guidelines state that people with moderate CFS have reduced mobility and are restricted in all areas of daily living. Here she is talking about walking all over London. In her other videos you can see that she flies all over the world, performs as a musician on stage, etc. This is not an accurate picture of someone with moderate CFS.
     
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  4. Bob

    Bob

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    Fair point, but she also says she fluctuates and has good weeks and bad weeks. She also says she's been steadily deteriorating, overall. It's quite difficult to assess someone from a video.
     
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  5. Scarecrow

    Scarecrow Revolting Peasant

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    It's a bit difficult to diagnose at a distance. She also talked about reducing her hours down to three hours a day in a job from which she was eventually dismissed. That doesn't really fit mild either.
     
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  6. Valentijn

    Valentijn WE ARE KINA

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    I think her orthostatic intolerance might be unusually prominent. But it did sound like she has PEM too.
     
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  7. halcyon

    halcyon Senior Member

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    I'd say she seems to fit mild better.

     
  8. halcyon

    halcyon Senior Member

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    Sure, but watch her other videos. Most people with moderate CFS will not be able to recognize the things you can see her doing as anything they are capable of.
     
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  9. worldbackwards

    worldbackwards A unique snowflake

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    It's possible if she's deteriorating that she's overdoing things. I was traipsing around long past the point where it was doing me serious damage.

    To be honest, God knows.
     
  10. Dolphin

    Dolphin Senior Member

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    Here's her page on Wikipedia: https://en.wikipedia.org/wiki/Emma_Blackery

    I'd never heard of her either but she has some following and the video already has over 200,000 views!
     
  11. leokitten

    leokitten Senior Member

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    @halcyon @SOC who cares what severity level she was diagnosed with. Where are you going with this?

    Does her severity level make her less important than those who are more severe or change treatment recommendations? The answer is unequivocally NO.

    It is all too often on this site that I get the whiff or undertone in posts that people with milder ME are not as important because they possibly haven't suffered as much as those who are more severe, but no one can make that judgement anyway because they don't know what people are going through and have lost due to this disease regardless of severity level.
     
    Last edited: Jul 19, 2015
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  12. Bob

    Bob

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    I totally agree that it's not helpful to compare ourselves against each other in such a way, and I can understand why you get frustrated if that's the vibe you are getting. But I'm certain that's not where people are coming from in this thread. It's important for our illness to be accurately reflected in the media, and if a patient says that they are moderately affected but is seen to be very active (at least on occasion) then the impression that this gives the public is unhelpful. i.e. the viewer can be left thinking "you've got moderate ME, but you can still do rock concerts and fly found the world - that doesn't sound too bad."

    As patients, we know that our illness is far more complex than can be easily portrayed in a short media clip, but the public doesn't have any insight into it, so first impressions are important. So I think people just like to get the labelling correct so that our lives are accurately portrayed.

    As I said in my earlier post, it's not possible to assess someone from a video as this illness is so complex. Some people are able to push through for a while despite feeling constantly hideous. Some of us have more cognitive issues than others. Some of us have mainly physical issues without brain fog. Some of us have much more reactive post exertional exacerbation than others. And some of us can choose whether to be more active (less disabled) with more severe symptoms or to be less active (more disabled) with less severe symptoms, by pacing and managing our actively levels vs post exertions exacerbation. So we all have different capabilities and manage our lives differently.

    I don't think it's helpful to compare ourselves to each other, but I do understand why people want to get the labelling accurate when the illness is portrayed in the media, and that's what people are picking up on in this thread.
     
    Last edited: Jul 25, 2015
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  13. worldbackwards

    worldbackwards A unique snowflake

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    To be perfectly honest, I think it's more the kind of pedantic waffling that tends to go on between a bunch of people who know far more about something that they ought to. Myself included. :)
     
  14. leokitten

    leokitten Senior Member

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    @Bob I initially thought the same thing, that maybe people here are concerned about perception related to severity levels, but if anyone watches the video in its entirety you see clearly that she has long periods of time when she is doing horribly, cannot function, and has been steadily getting worse. I certainly didn't get any impression that she can constantly fly around the world etc. Yes maybe at times in the past when she had better streaks she was able to but I got the clear impression that currently she is not doing that well.
     
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  15. Dolphin

    Dolphin Senior Member

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    The categories in the NICE guidelines are rather stark
    So people in the mild group are able to work and people in the moderate group have "usually stopped work, school or college". However, many people are only able to work a bit. I would describe a lot of the people who can't work full-time but can work a bit (as long as it is not physically intensive work) as being moderately affected.

    I think it depends on the other demands on people. For example, if you have children, they take up a lot of energy and often disturb sleep. I'd put a lot of the people who have no children and can't work full-time in the moderate category.
     
    Last edited: Jul 19, 2015
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  16. leokitten

    leokitten Senior Member

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    Also I think it's more complex and these crude categories just don't make the mark. PWME can have sometimes rapid fluctuations in severity and at any one time change severity category. That's why I think these labels are somewhat useless and harmful.

    If I were to use these crude categories I was definitely moderate ME for the first 1.5 years of illness but I still worked full-time because I just pushed so hard and enough damage hadn't accumulated yet. I couldn't have kept working if the disease stayed at that severity. Fortunately, after starting treatment at 9 months then slowly from the 1.5 year mark to now (2.5 years) I moved to mild ME with only short bouts back to the moderate ME. I'm still at that point where for the most part I'm mild severity but without warning it goes back for a couple weeks to moderate severity. I still work full-time with a lot of difficulty but its just because like you have alluded to, every body is different in how it's affected and how it compensates. That's why these mild, moderate, severe categories are not that useful.
     
    Last edited: Jul 19, 2015
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  17. halcyon

    halcyon Senior Member

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    I don't think I was unclear at all. I worry that she has been misdiagnosed potentially as she seems capable of quite a bit more than most people with moderate ME are. We all know the situation in the UK is deplorable and it's scary to think that she could have some other underlying condition that won't be properly investigated now thanks to NICE guidelines. Obviously we only see a small picture of her life in her videos. Perhaps she crashes for weeks after walking around London, or months after going on tour and playing on stage and yes, obviously we don't see that. If that is the case I really hope that she starts documenting that in her videos. Someone in her position could do a lot to educate others about just how devastating this disease is. Bob has captured my other concerns quite well in post #12 so I won't bother to repeat it.

    Did I say or even imply that? No, I didn't. I would appreciate if you would stop accusing me of discriminating against mild patients, I do no such thing. I fully understand exactly what this disease can do to a person, regardless of severity level. Any undertones you get from me are purely your own projection.
     
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  18. Sidereal

    Sidereal Senior Member

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    People with mild ME/CFS are just as important as everyone else. Someone who says she is walking all over London and is travelling back and forth between London and California does not have moderate ME or even moderate Fukuda CFS, though, so this terminology is troubling to people with actual moderate or severe ME/CFS since the gen pop might get the impression that people with moderate ME/CFS can travel around the world.

    The NHS doctor who diagnosed moderate CFS is simply talking through his/her hole. Judging by the patient's video she got the usual twenty dollar NHS workup consisting of CBC, basic metabolic panel, TSH, maybe CRP and sed rate, and was told - in a chastising tone suggesting some heroic effort had been made to be rule out all kinds of disease - that All Your Tests Are Normal.
     
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  19. leokitten

    leokitten Senior Member

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    My apologies but I'm confused now, if you aren't being unclear then you should edit your posts, in particular the original one. Your original post is written stating that you feel her doctor misdiagnosed her ME/CFS severity level, not possibly misdiagnosing her as having ME/CFS, which it seems in your response that this is what you meant?

    And because your original posts in this thread seem so concerned about a person having their severity level properly labeled then apologies but it can easily be misconstrued, other people reading this thread agreed.
     
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  20. worldbackwards

    worldbackwards A unique snowflake

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    I used to go walking around London and travelling across the country, right up to the point where I could barely walk at all. I had all sorts of vicious symptoms. No-one cared how ill I was, no-one told me to stop. I've been sick for 15 years since then.

    Was I severely affected then when I was still trying to get around or did I only get severely affected when I stopped? Can you tell me how badly affected I was then? Or perhaps you don't know, because you weren't there and you don't know the whole story.
    People with ME can do all sorts of things for a while. Until they can't.
     
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