• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME in the Guardian, as a neurological disease

chipmunk1

Senior Member
Messages
765
Watch the highly organised ME lobby get to work on this one. They're already at it. Medical journals won't publish articles on ME (except to debunk it) but newspapers will and that's good enough for the lobby. All the evidence its members need is personal experience (I feel bad, I don't want to be told that this is quite normal and most people feel bad most of the time, I certainly don't want to be told that I have some sort of mental illness - I'm not 'mental', hence I've decided that I have an organic condition, even if it's one that behaves according to known medical norms). The lobby also thrives on uncritical publicity in the press through articles such as this.

Some people have unrecognised symptoms and get referred to as having ME, but others who 'have' ME have nothing wrong with them except that they're p----ed off with life. Strangely, all that fatigue never prevents members of the ME lobby from writing articles, letters, e-mails and posts announcing how 'ill' they are. (There are ME sufferers who do nothing but bombard medical doctors and researchers who're critical of this condition with abuse).

To the author: I'm sorry if you're unwell or unappy or both, but face the facts and stop hiding behind the convenient device of ME. Most of us are unhappy most of the time; some of us are ill. We largely just get on with things as best we can. The very idea of ME is an insult to those with genuine conditions such as MS, but they get on with life. You should try that as a therapy.
 

worldbackwards

Senior Member
Messages
2,051
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.
 
Last edited:

chipmunk1

Senior Member
Messages
765
All the evidence its members need is personal experience (I feel bad, I don't want to be told that this is quite normal and most people feel bad most of the time

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.
 

halcyon

Senior Member
Messages
2,482
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.
 

worldbackwards

Senior Member
Messages
2,051
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:
 

A.B.

Senior Member
Messages
3,780
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:

adreno

PR activist
Messages
4,841
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.
 

GracieJ

Senior Member
Messages
772
Location
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.
 

Kenshin

Senior Member
Messages
161
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.
 

biophile

Places I'd rather be.
Messages
8,977
B492vLGIAAA414L.jpg


B49qJKcIcAEzfMi.jpg
 

Min

Guest
Messages
1,387
Location
UK
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.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Chipmunk's diatribe seems rude and deluded
Why so much anger against the sick?
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.
 

Forbin

Senior Member
Messages
966
"The very idea of ME is an insult to those with genuine conditions such as MS, but they get on with life. You should try that as a therapy."

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.