Severe ME/CFS

[consuegra]

http://cfspatientadvocate.blogspot.com/2014/12/this-time-of-year-and-severe-mecfs.html

 

[Iquitos]

I agree with your thoughts on this, but the phrase "half-sick" is a bit offensive.

I function at about 25-30% of normal and I'm sometimes housebound, especially at this time of year. Am I "half-sick"?

I DO hope the severely ill will receive the focus that is needed, for their sake and mine. I am probably on my way to joining that group. Despite somewhat effective treatment for several of my symptoms, the ataxia is getting worse. The last time I fell, I broke my leg and dislocated my shoulder. At age 67, if/when I fall again I'll probably be in a wheelchair the rest of my life, at best. That's IF I survive the surgery, etc.

Thanks for all you do. Wish I had an advocate like you.

 

[consuegra]

lquitos

I changed that term. Thanks for the edit. I agree with you. Thanks for your help.

The best in the new year to you

Best.

Chris

 

[Kati]

I agree with your thoughts on this, but the phrase "half-sick" is a bit offensive.

I function at about 25-30% of normal and I'm sometimes housebound, especially at this time of year. Am I "half-sick"?

I DO hope the severely ill will receive the focus that is needed, for their sake and mine. I am probably on my way to joining that group. Despite somewhat effective treatment for several of my symptoms, the ataxia is getting worse. The last time I fell, I broke my leg and dislocated my shoulder. At age 67, if/when I fall again I'll probably be in a wheelchair the rest of my life, at best. That's IF I survive the surgery, etc.

Thanks for all you do. Wish I had an advocate like you.

The half-sick comment was indeed offensive. There is attacks going on in the community about the fact that the less severely affected does not have Me, they just have CFS. There is even someone recently who said that because I did not respond to Rituximab, that I must have CFs because only patients with ME respond to Rituximab. The truth is that we do not know the pathophysiology of ME therefore we do not know why some respond to one drug/regimen and why others don't.

There are several reasons why severe patients do not get more exposure in social media, apart from the very obvious one, that they simply cannot access social media. There is the risk of health authorities forcing the patient into dangerous treatments. The desire for privacy and protecting the patient from enormous stigma. However, if such home video can be made available, us the half-sick will share it to the medical world.

As you probably found out with your daughter @consuegra, accessing health care for the severely ill is extremely delicate affair. Respect for the sensorial needs, the need for thorough history, testing/ imaging and home visit by a knowledgeable doctor is costly and very difficult.

While the need of these folks need to be addressed, claiming that the rest of us are half sick and that researching us has less impact therefore should not be studied, I don't buy. Because after all it's through people who could get onto a bike and on a tilt table that we could find new abnormalities and advance science. It is also though patients who can make it through meeting and engage in the social media that we can further the politics.

Until we have new clues about case definition and subsets, we have each other. We have strength of numbers. There is a potential for leverage.

But please, let's not accuse one another of not being sick enough.

 

[akrasia]

Hi Chris,
Your points are well taken. I just wanted to add, in case you missed it, that the CDC, as part of their multi site study, has stated that they want to "enroll home-bound (severely ill) CFS patients."

It's the CDC so the usual skepticism applies, but, nonetheless, I can't remember anything like this.

 

[Christopher]

I wonder if the most severely ill are living in houses with hidden toxic mold. I was quickly on my way to becoming severe after crashing a few days after moving into a new house. Moving out of that house I quickly regained most of my functionality.

 

[lansbergen]

I wonder if the most severely ill are living in houses with hidden toxic mold. I was quickly on my way to becoming severe after crashing a few days after moving into a new house. Moving out of that house I quickly regained most of my functionality.

I did not move before I fell ill and still live in the same house.

 

[Christopher]

I did not move before I fell ill and still live in the same house.

Any idea if there is mold inside your walls?

 

[justy]

Thanks for the bog post, I agree that indeed the severely ill need more help, as their situation I absolutely horrendous. I have friends in this situation and watching their suffering is traumatic.

In terns of levels of illness I find myself in a no mans land, and equally invisible because I am classed as severe, because I am mainly house/wheelchair bound and function at about 25%, but am not ill enough to be classed as severe by tohers who are Very severe. We are all sick and all need help.

 

[lansbergen]

Any idea if there is mold inside your walls?

Don't know, don't care. My improvement is more important.