Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

ME in the Guardian, as a neurological disease

Discussion in 'General ME/CFS News' started by Sinclair, Dec 29, 2014.

  1. Sinclair

    Sinclair Senior Member

    Messages:
    129
    Likes:
    41
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,807
    Cornwall, UK
    Shame the headline refers to 'chronic fatigue' but otherwise good!
     
    justy and Bob like this.
  3. chipmunk1

    chipmunk1 Senior Member

    Messages:
    765
    Likes:
    2,821
     
  4. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    I saw that one. It's funny how what basically amounts to a bunch of sick people on internet forums who rarely ever get anything they want amount to a 'highly organised ME lobby'. Whilst a coterie of establishment psychiatrists led by the head of the Royal College are just pitiful rabbits in the headlights of our incoherent, unscientific fury. Or is that just me.

    I got sick at university and was told it would be a 'tragedy' if it were to stop me completing my studies. A few months later when I could barely walk, the definition of tragedy seemed to have been changed, only no-one much noticed. I hope anyone thinking of going makes sure they're well enough before they start and are prepared to acknowledge if they get out of their depth (hopefully alongside others). There's nothing worse than ploughing on 'just 'til you've got your degree' and then finding out it's not going to be much use anymore.
     
  5. chipmunk1

    chipmunk1 Senior Member

    Messages:
    765
    Likes:
    2,821
    An interesting point if you think about it. ME is often belittled with phrases like this: Everyone is fatigued that's normal.

    Is it?

    I don't remember feeling unpleasant fatigue not even slight fatigue before i got ill. I remember some fatigue when being sleep deprived or after exercise but the latter was a pleasant kind of exhaustion.

    Do most healthy people feel bad most of the time? I don't recall feeling bad before i got ill.

    In my opinion even frequent light fatigue without any known cause is not normal if you are still young.
     
  6. halcyon

    halcyon Senior Member

    Messages:
    2,297
    Likes:
    5,377
    That's why we need to get away from fatigue being a major part of this disease. It just isn't. I'd bet that every single person here would happily exchange all of their symptoms for fatigue.

    Not being able to stand up or walk short distances has nothing to do with fatigue. Healthy people can't understand or relate to this.
     
  7. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    I was just thinking that. Before someone told me I had CFS (after about 9 months), I never thought about tiredness, it just seemed completely beside the point. The thing I remember as the major business was how heavy and difficult to manoeuvre my limbs had become, amongst everything else - you could say this was tiredness (and yes, I felt tired as well), but it was of no resemblance to the tiredness I had felt before - I felt (and still feel) extremely ill. Yet, as soon as I was diagnosed, I was 'tired' and that was that. :rolleyes:
     
    ahimsa, NK17, jeff_w and 2 others like this.
  8. GracieJ

    GracieJ Senior Member

    Messages:
    761
    Likes:
    1,763
    Utah
    @chipmunk1

    It looks like that comment was removed...

    It sure would be nice to know where that powerful and organized lobby is operating.o_O
     
    Last edited: Jan 2, 2015
    NK17 and MeSci like this.
  9. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,189
    I'm pretty sure a substantial portion of the controversy surrounding ME/CFS has been manufactured by parties with financial interests in the matter.

    I'm specifically referring to the belief that ALL people with ME/CFS are perfectly healthy.

    It's hard to imagine that someone could be so out of touch and stubborn for so long. Evidence of various biological abnormalities in the ME/CFS population has existed for decades. This is clearly not a healthy population. We're on the moon landing denier level here.

    That isn't to say that everyone who argues this way has financial interests. I think it's just a few key figure spreading this belief, and then some others adopt it because it suits them for whatever reason.

    I think we should call such people "illness deniers".
     
    Last edited: Dec 29, 2014
    GalaxiiGrl, NK17, MeSci and 4 others like this.
  10. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,021
    Yes, you might be able to get through university with mild to moderate ME/CFS if you are allowed to pace yourself...but can you hold down a job afterwards? Very few jobs allow this flexibility.
     
    NK17, mango, MeSci and 7 others like this.
  11. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    Pushing yourself through a university course when mildly affected could make you permanently severely disabled.
     
    NK17, mango, Blue and 8 others like this.
  12. GracieJ

    GracieJ Senior Member

    Messages:
    761
    Likes:
    1,763
    Utah
    I made it back to feeling fairly normal for a year or two, and worked a 40-hour week in an office for a year. I was AMAZED that I mostly felt okay. After work, I felt tired, but welcomed it because it felt NORMAL. Normal tiredness can still run errands, can still comprehend a conversation, can still run a few loads of laundry or fix a meal. It is very different from the weighed-down feeling of no energy with ME/CFS.

    It is hard to explain to others that it is more than tired or exhausted or fatigued. There are no words that convey it simply. It is none of those.
     
    NK17, MeSci and jeff_w like this.
  13. Kenshin

    Kenshin

    Messages:
    67
    Likes:
    152
    I never referred to my symptom/s as "fatigue" or "tiredness" before I heard it said to me, I used words like "paralyzed" and "poisoned". What we feel is not fatigue or tiredness it is something so alien we struggle to describe it and end up settling with "fatigue".

    I pushed myself to do a college course whilst ill, what happened was I had to quit the course because it left me bedridden for many months and permanently worse for it.
     
    GracieJ, NK17, MeSci and 6 others like this.
  14. Mel9

    Mel9 Senior Member

    Messages:
    416
    Likes:
    982
    NSW Australia
    The post reported by Chipmunk' seems rude and deluded
    Why so much anger against the sick?
    Sorry Chipmunk I am new to this
     
    Last edited: Dec 30, 2014
    Scarecrow and Wildcat like this.
  15. biophile

    biophile Places I'd rather be.

    Messages:
    1,520
    Likes:
    16,577
  16. alex3619

    alex3619 Senior Member

    Messages:
    12,491
    Likes:
    35,106
    Logan, Queensland, Australia
    It seems apt!
     
    NK17 likes this.
  17. alex3619

    alex3619 Senior Member

    Messages:
    12,491
    Likes:
    35,106
    Logan, Queensland, Australia
    That is what my Honours year and my PhD candidacy did, though more at the severe end of moderate for me. I have never recovered.
     
  18. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    We should expect charities such ad Action for ME to act responsibly and give clear warnings about the consequences of pushing oneself too hard when suffering from myalgic encephalomyelitis when interviewed for these articles, but they never ever do.
     
    Wildcat, mango and RustyJ like this.
  19. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,899
    Likes:
    5,373
    Scotland
    Hi, Mel9. It wasn't chipmunk1 that wrote that. That was the presumably now deleted post on The Guardian's site. You can tell when a member is quoting someone else by the quote boxes with the yellow orange background.
     
    Wildcat and Min like this.
  20. Forbin

    Forbin Senior Member

    Messages:
    952
    Likes:
    4,002
    Somehow, I'm reminded of how, in the early going of the AIDS epidemic - then known as "GRID" for "Gay Related Immune Deficiency" - that the illness was seriously attributed by some researchers to "the stress of a gay lifestyle."

    I'm not quite sure that there is a hole deep enough for one to crawl into after an assertion like that.
     
    GracieJ, GalaxiiGrl, Wildcat and 4 others like this.

See more popular forum discussions.

Share This Page