For Those With Severe ME/CFS: A New Website

[mezombie]

http://www.stonebird.co.uk/

This is another valuable contribution from Greg Crowhurst, carer and partner of Linda Crowhurst, who has severe ME.

 

[_Kim_]

There is a gallery of Greg Crowhurst's paintings on their new website. Powerful!

 

[Dr. Yes]

The Isolation​

In Severe ME you are completely isolated, on every level.You are isolated by the illness, it affects you cognitively, so that you are even isolated from your own thoughts and knowledge. No one else can begin to imagine the horror and the torment of the physical experience. You live in splendid isolation, where everyone you knew and everything you loved to do are impossible to make contact with and it gets worse, the longer you are ill, as your symptoms deteriorate and people fall by the wayside.

(Painting by Greg Crowhurst, commentary by Linda Crowhurst)



​

 

[starryeyes]

The following is written by Greg Crowhurst on his site:

Don't be misled by any organization who says they represent people with ME. Check out the facts.

Do ask the following questions:

Are they calling it Myalgic Encephalomyelitis?

Are they calling it ME/CFS? Or are they leaning towards a psychiatric definition?

Are they calling it Myalgic Encephalopathy?

Are they calling it CFS/ME?

Are they calling it CF?

Are they calling it Functional Somatic Disorder?

Are they proposing a biopsychosocial model incorporating CBT/GET and a strict pacing regime?

Are they suggesting that ME can be managed?

Are they pretending you are going to get better even if you have been severely ill for more than 4 years?

Be aware of the message those who represent you are conveying :

Are they independently and proactively standing up for the truth that ME is a physical , World Health Organization classified neurological disease?

Are they fully consulting with their membership?

Are they being influenced by any vested interests or are they linked to any organization
or individual with vested interests in maintaining a psychiatric paradigm for ME?

Are they attempting to undermine in any way the WHO classification and terminology?

Are they recommending dialogue and compromise with the psychiatric lobby, either overtly or covertly?

Considering that years ago the CFS Name Change Committee decided on ME/CFS as the official name for our illness, it's odd that the CAA still calls itself "The CFIDS Association of America".

 

[leelaplay]

Dr Yes - great capturing, visually and verbally, of the isolation

tee - very useful questions - I almost think we should start a thread for newbies and have this as the advice for looking at ME/CFS orgs

I found the source of the site's name, stonebird, inspiring - it took me over a year after first getting sick to have more belief than disbelief in this.

The Stone Bird
The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters.

 

[starryeyes]

Dr Yes - great capturing, visually and verbally, of the isolation

tee - very useful questions - I almost think we should start a thread for newbies and have this as the advice for looking at ME/CFS orgs

I found the source of the site's name, stonebird, inspiring - it took me over a year after first getting sick to have more belief than disbelief in this.

The Stone Bird
The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters.

I love that Stone Bird quote, IF.

Nice poem Maarten.

 

[Dr. Yes]

Prometheus Bound is an image that has come to mind again and again as I've struggled with basic existence. It has often felt like I go to sleep, or try to rest, so that my cells and organs could make a pitiful attempt at regeneration -- for the sole purpose of being torn apart all over again. It has felt like some sort of 'Olympian' punishment at times.

One strategy, I suppose, is to somehow keep hoping that the bird (or Zeus!) will lose interest.

 

[_Kim_]

Prometheus Bound is an image that has come to mind again and again as I've struggled with basic existence. It has often felt like I go to sleep, or try to rest, so that my cells and organs could make a pitiful attempt at regeneration -- for the sole purpose of being torn apart all over again. It has felt like some sort of 'Olympian' punishment at times.

One strategy, I suppose, is to somehow keep hoping that the bird (or Zeus!) will lose interest.

Dr. Yes. - Your words bear repeating. With pictorial commentary.

​

 

[MEKoan]

The Crowhursts are heroes. I have been following their videos for years. Which means Linda has been in intractable pain for years. And, Greg has been holding her up, so tenderly, so lovingly for years... all many more years than I have been watching... without help, really, without support, with derision and humiliation and obstacles everywhere they turn.

The Crowhursts are heroes. I want a cure for them.

 

[starryeyes]

A cure for the Crowhursts! And for us all!

CFS makes me feel like Sisyphus every day.

 

[RestingInHim]

tee - very useful questions - I almost think we should start a thread for newbies and have this as the advice for looking at ME/CFS orgs

great idea, islandfinn! just reading thru them was a good reminder, and would be great for a newbie, to know ME/CFS isn't what many confused people think and/or say it is!

love this thread!

 

[RestingInHim]

Considering that years ago the CFS Name Change Committee decided on ME/CFS as the official name for our illness, it's odd that the CAA still calls itself "The CFIDS Association of America".

didn't know that, tee...but i've been considering just telling people "i have ME or Myalgic Encephalomyelitis", since i'm almost ashamed to say "i have Chronic Fatigue Syndrome", and then hold my breath to see how they will react! and now that i read on Stone Bird: "Myalgic Encephalomyelitis is a World Health Organization - classified neurological disease that affects multiple systems of the body, causing severe disability and may lead to death. It is not a psychiatric disorder"...i wonder why we aren't ALL calling it that...no matter what side of the pond we live on??? what do you think?

resting...but wondering

 

[RestingInHim]

a stat i'm sure you all know, but i found as an incredible fact to tuck away in my pocket, another quote fom Stone Bird: "A Fact :ME is bigger than AIDS, lung cancer and breast cancer combined. More people have ME than have multiple sclerosis or cystic fibrosis, yet nearly 90% of patients have not been properly diagnosed."

i know that the xmrv possible find says 10% of the population could be carriers...but the above fact is about an already diagnosed illness.

here's a touchy question: since ME/CFS is still clinically diagnosed....do you think some docs label people with it who don't meet all the definitions, such as post-exertional malaise...which seems to be the defining symptom, separating ME/CFS from other illnesses?

a touchier question: do you think there are more people who are not truly physically ill that get labelled with ME/CFS because docs don't know what to do with them?

just wondering...perhaps it's because i think some people think i'm a hypochondriac when i say the words "Chronic Fatigue Syndrome".

maybe i'm just hyper-sensitive about it sometimes.

sure doesn't sound like i'm...resting!

 

[IntuneJune]

The Isolation[/CENTER]

You are isolated by the illness, it affects you cognitively, so that you are even isolated from your own thoughts and knowledge.

[/CENTER]
[/LEFT]
[/CENTER]

Oh, I love that. I frequently say, "I cannot be the person I am" but the quote above zeros in at a deeper level.

June

 

[Mithriel]

a stat i'm sure you all know, but i found as an incredible fact to tuck away in my pocket, another quote fom Stone Bird: "A Fact :ME is bigger than AIDS, lung cancer and breast cancer combined. More people have ME than have multiple sclerosis or cystic fibrosis, yet nearly 90% of patients have not been properly diagnosed."

i know that the xmrv possible find says 10% of the population could be carriers...but the above fact is about an already diagnosed illness.

here's a touchy question: since ME/CFS is still clinically diagnosed....do you think some docs label people with it who don't meet all the definitions, such as post-exertional malaise...which seems to be the defining symptom, separating ME/CFS from other illnesses?

a touchier question: do you think there are more people who are not truly physically ill that get labelled with ME/CFS because docs don't know what to do with them?

just wondering...perhaps it's because i think some people think i'm a hypochondriac when i say the words "Chronic Fatigue Syndrome".

maybe i'm just hyper-sensitive about it sometimes.

sure doesn't sound like i'm...resting!

Yes, we have a problem with that in the UK. They have always considered CFS to be the same as neurasthenia and anyone who feels fatigued or just tired all the time can be told they have CFS. No one here is ever diagnosed with proper ME any more.

The "experts" claim that ME is the name patients prefer for CFS, - some even claim it is a new name invented to sound scientific, they are an ignorant lot - so a doctor may say ME or let the patient call it ME. This leads to people who consider they have had "a touch of ME" and are willing to tell you how they got better because they tried while you are still ill because of moral weakness.

ME has become a symptom as some people use it to mean fatigue. I doubt if many of them know what the initials stand for.

The numbers who have plain fatigue rather than actual classic PEM ME are much higher and they are less ill so their voice is louder than ours. Many of the people clamouring for more clinics doing CBT and GET fall into this category.

To be fair, many people diagnosed with CFS don't have ME but something else serious but many of them think they have it and they are just as disbelieving of the extent of our suffering as any psyche.

I think it is one of the explanations for the way our patient organizations neglect true ME - many of their members don't have it.

In the papers this week was a women with ME who is climbing Everest for a heart charity. You see what we are up against.

Mithriel

 

[justinreilly]

In the papers this week was a women with ME who is climbing Everest for a heart charity. You see what we are up against.

Mithriel

LOL! unbelievable!

Doubly funny to me 'cause the supposed ME sufferer isn't even doing it to support an ME org- which just mirrors the broader lack of fundraising 'walk a thons' etc. for ME.

 

[justinreilly]

didn't know that, tee...but i've been considering just telling people "i have ME or Myalgic Encephalomyelitis", since i'm almost ashamed to say "i have Chronic Fatigue Syndrome", and then hold my breath to see how they will react! and now that i read on Stone Bird: "Myalgic Encephalomyelitis is a World Health Organization - classified neurological disease that affects multiple systems of the body, causing severe disability and may lead to death. It is not a psychiatric disorder"...i wonder why we aren't ALL calling it that...no matter what side of the pond we live on??? what do you think?

resting...but wondering

Exactly!! I call it ME/CFIDS which can be a little bulky in conversation, but if we don't adopt the terminology, noone will.

 

[justinreilly]

here's a touchy question: since ME/CFS is still clinically diagnosed....do you think some docs label people with it who don't meet all the definitions, such as post-exertional malaise...which seems to be the defining symptom, separating ME/CFS from other illnesses?

a touchier question: do you think there are more people who are not truly physically ill that get labelled with ME/CFS because docs don't know what to do with them?

It seems to me that almost all physicians use the Fukuda criteria, which aren't 100% accurate, but are close enough to probably get say 98% overlap with the 'real' Canadian Definition, so no I think only a small number in the US get a CFS diagnosis when they don't have it.

ME/CFIDS has a unique presentation that is reflected in the two definitions.

In the UK, though, it's an insane problem because of their 'Oxford' definition which is just tiredness!

 

[starryeyes]

didn't know that, tee...but i've been considering just telling people "i have ME or Myalgic Encephalomyelitis", since i'm almost ashamed to say "i have Chronic Fatigue Syndrome", and then hold my breath to see how they will react! and now that i read on Stone Bird: "Myalgic Encephalomyelitis is a World Health Organization - classified neurological disease that affects multiple systems of the body, causing severe disability and may lead to death. It is not a psychiatric disorder"...i wonder why we aren't ALL calling it that...no matter what side of the pond we live on??? what do you think?

resting...but wondering

I usually use both CFS and ME and I explain to my doctors and to others what ME stands for and means and a little about the politics and the CDC wanting to make us look like we're just psychiatrically ill.

 

[starryeyes]

LOL! unbelievable!

Doubly funny to me 'cause the supposed ME sufferer isn't even doing it to support an ME org- which just mirrors the broader lack of fundraising 'walk a thons' etc. for ME.

Now wait a minute. Not so fast. When ME is mild, some people with it can do things like this or attempt them. We would need to be near her to her to listen to her breathing and also observe her during the climb and see if she is experiencing worse altitude symptoms than those around her.

I know because I had mild ME for 14 years after being bedridden the first year and I was able to do forest fighting in the summer and teach full time and I went to white water raft guide school etc... However, I breathed way harder than anyone else, people on the fire line would call out, "Oh tee, you don't have to breathe like that!" So it was very loud and yes I did. I couldn't help it.

I was also in tremendous pain on some fires but that was due to my period. Back then I could push through pain etc... however when after the fires I would often spend most of my time lying down when at home. I knew it was because of the CFS. So we would also want to watch that lady after the climb and see if she's able to perform normal daily activities or if she seems to have PEM.

This just shows how much our symptoms can fluctuate. After I sprained my back in 2000 and went into perimenopause, (which generally precedes menopause itself by about 10 years) I developed severe fibo and my CFS came roaring back. I've been 95% bedridden for about a decade now.

That's how ME/CFS is! And I for one, would really like to see our support groups explaining this situation we are in.

Please don't ever doubt people have this just because of what they can do. I do agree though that news stories like this are working against us right now because ME/CFS needs to be fully explained by the support groups and the media and our health institutions.