Moving a Severe ME patient

[Ember]

By the CFS Patient Advocate
Thursday, May 30, 2013

I was at the recent FDA meeting. Whether it is this meeting or any other government meetings, no mention is ever made of severely ill ME/CFS patients. No depiction of the real severity of the illness is recorded or given. There seems to be a constitutional allergy to depicting "the core of this illness".

This is true of government bureaucrats as well as patients, advocates, physicians, and clinicians – everyone. Many "half-sick", ambulatory patients give eloquent and heartfelt testimonies at government grieving altars. Regardless of the sacrifice on the part of patients, this information does not seem to impress anyone. Nothing happens. This is a longstanding reality.

It is a structural problem – not embracing the deep seriousness of the illness. No one wants to go there.

ME is a dangerous, debilitating, life-destroying illness of a frightening dimension. The government’s half-baked response to this illness shows great disregard - and manifests incredible cruelty towards patients with this serious illness.

Until those at the center of this illness - those in darkened rooms - are depicted and embraced and understood, nothing will happen at the government level.

In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos ), should be mandatory - to set the stage and to get the participants in the right frame of mind.

There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said – no. The government is content to give a grieving altar to the moderately ill and leave it at that.

The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything....

More: http://cfspatientadvocate.blogspot.ca/2013/05/moving-severe-me-patient.html

 

[Sasha]

I saw this - I'm not as ill as this but I've got serious problems if I want to travel from one town to another, which I don't attempt more than once a year.

Chris is right that the most severely ill among us are hidden, and that that's wrong.

 

[Nielk]

I was too ill to attend the CFSAC but, I gave my testimony over the phone. I did emphasize the severely ill.

I am fortunate that today I am able to deliver this oral testimony. Last year, I couldn’t. I was too ill to deliver an oral speech without stuttering and making mistakes. I was bedbound, in severe pain. I would like to speak about this severity because I feel that there needs to be a voice for the estimated 25% of most severe cases of ME/CFS in this country. They have been ignored for too long. They are not part of the results of the survey that Dr. Unger undertook of ME/CFS patients in several major clinical settings. Why do we leave them out as if they don’t exist? Even though the severely ill patients are bedbound, we have the tools today to reach them by phone or skype. I cannot think of any other lengthy chronic illness which renders their patients bedbound for 10, 18, 30 years!

 

[Sasha]

I was too ill to attend the CFSAC but, I gave my testimony over the phone. I did emphasize the severely ill.

I liked it that you made the point that the previous year, you couldn't go.

Chris, in his piece, made the point that govt committees should be forced to watch 'Voices from the Shadows' at the beginning of the meeting. Good idea.

 

[Misfit Toy]

It's so crazy. How can anyone turn their head to this? Do they really think individuals just want to hang out in a bed like this? Even psychiatrists say that no one wants to really be sick and anxious. No one wants to be even a hypochondriac. We are not that. No one wants to not thrive.

People don't want to hang out in their room, or house for years.

The only word I can think of that comes to my mind for this behavior is a major curse word. It starts with an F and ends with an ed on the end of it.

 

[Shell]

My GP asked me if I was afraid to die, when I mentioned the way people die of ME. "No," I told him, "I'm certainly not afraid to die, I'd be out of it then wouldn't I? No, what scares the hell out of me, is ending up bedbound with no help or hope. THAT really does scare me as I get worse and worse with this illness."

Even my GP, who is one of the good ones, doesn't get it really.

 

[Little Bluestem]

The government is content to give a grieving altar to the moderately ill and leave it at that.

Even the moderately ill need more than that or we will be joining the ranks of the bedbound.

 

[Misfit Toy]

Shell, I wonder if he doesn't get it or if he is just scared. He's watching someone unravelling and feels powerless. IT's a sad situation. My doc had CFS and gets scared when I am really sick. He becomes silent. I know it's bothering him, not just as a doctor, but it's a fear that grows deeper than that. He knows that as much as he thinks he can help me, he really can't.

 

[PennyIA]

My GP asked me if I was afraid to die, when I mentioned the way people die of ME. "No," I told him, "I'm certainly not afraid to die, I'd be out of it then wouldn't I? No, what scares the hell out of me, is ending up bedbound with no help or hope. THAT really does scare me as I get worse and worse with this illness."

EXACTLY. My biggest fear is getting completely bed-bound and 'stuck'. Spending the next 20 years as ill as I have been is not acceptible.