Discussion in 'General ME/CFS News' started by Sinclair, Dec 29, 2014.
Shame the headline refers to 'chronic fatigue' but otherwise good!
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.
An interesting point if you think about it. ME is often belittled with phrases like this: Everyone is fatigued that's normal.
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.
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.
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.
It looks like that comment was removed...
It sure would be nice to know where that powerful and organized lobby is operating.
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".
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.
Pushing yourself through a university course when mildly affected could make you permanently severely disabled.
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.
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.
The post reported by Chipmunk' seems rude and deluded
Why so much anger against the sick?
Sorry Chipmunk I am new to this
It seems apt!
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.
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.
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.
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.
You can also try a Google Site Search
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