What would YOU say?

[Timaca]

If you could say one or two (or three) things to a doctor, med student or congress person about your illness, what would it be?

Please keep your reply brief....one or two sentences per point.

I've got an idea for a possible project and I want your input!

Thanks,
Timaca

 

[Nielk]

1- it doesn't have a proper name
2- there is no cure
3- it is debilitating in a multi-function way

 

[Dreambirdie]

1. M.E. a chronic debilitating neuro-immune disease
2. those who have M.E. have a much greater likelihood of developing lymphoma and heart problems
3. our government has FAILED us miserably by not funding the badly needed research

 

[CBS]

1. What you are able to see when you look at me likely says more about you than it says about me.

2. There are effective treatments. Incremental gains can add up to a greatly improved quality of life. The fact that there is a lot going on in ME patients means that until we better understand the core underlying issues, progress might be defined as a combination of treatments aimed at addressing the systems that are misfiring. Many people are looking for the home run (and dismissing ME as psychological because of the absence of a home run to date). In baseball terminology, maybe some of us could benefit from playing more "small ball."

3. Don't believe the "poorly understood," "poorly defined" BS that is spouted by those who have failed to understand and haven't bothered/are too threatened to define.

 

[Carrigon]

This disease steals your life, your entire life. You lose the ability to work, go to school, socialize. Everything is gone.

The name must be changed to reflect the seriousness of this disease.

Patients need to be treated with respect.

 

[floydguy]

- The name must be changed. It is not merely tired for 6 months and 4 random symptoms.
- Based on the research of Klimas, Komaroff, Light, Montoya, etc. it should be dx'd based on inclusion not exclusion, ie legitimate lab tests, not vague symptoms.
- The CDC (Control, Deception & Corruption) is incompetent in regards to this disease (and probably in other areas too).

 

[health_seeker]

1. A number of cost-effective treatments exist which have greatly improve quality of life for some patients with CFS/ME.
2. There is a widespread misconception among the medical community that CFS is a
Psychological condition which can be cured through exercise and positive thinking.
3. These misconceptions mean that instead of getting the medical interventions which
could potentially improve their lives, many patients with CFS are told to exercise and given cognitive behavioral therapy, which worsens their condition, and sometimes pushes them into major depression, even suicide.

 

[Sparrow]

1. It is very real, and can often be far more debilitating and life-shattering than just about any other ongoing disease out there. Patients need far more respect, support, and sympathy.
2. It is not a lost cause. Many credible doctors are using drugs and supplements with success. But we desperately need more research.
3. The symptom of fatigue is often one of the easiest ones for patients to live with. There are so many others, and they are so much worse.

 

[usedtobeperkytina]

It's a disease causing multiple-system dysfunction, no one knows the cause.
Some are bed bound for years, others make some improvement but live with some limitations and have relapses, few recover completely.
For me, it is like I have early Alzheimer's disease, getting chemotherapy and in menopause all at once.

Tina

 

[eric_s]

- 1 Million people affected, costs 20 Billion every year
- No effective treatments
- Study this!

 

[biophile]

Some good suggestions on this thread. I chose a different format and take on the situation, something from a while ago for another thread but didn't get around to posting it. Give the person this poster to hang on their office wall, I hope this message comes across loud and clear!:

 

[justinreilly]

1. M.E. a chronic debilitating neuro-immune disease
2. those who have M.E. have a much greater likelihood of developing lymphoma and heart problems
3. our government has FAILED us miserably by not funding the badly needed research

+1

__________________

 

[Ocean]

1. It is very real, and can often be far more debilitating and life-shattering than just about any other ongoing disease out there. Patients need far more respect, support, and sympathy.
2. It is not a lost cause. Many credible doctors are using drugs and supplements with success. But we desperately need more research.
3. The symptom of fatigue is often one of the easiest ones for patients to live with. There are so many others, and they are so much worse.

So true about #3!

 

[jonnyboy]

1. This illness is a life wrecker.
2. We are NOT just tired
3. See points 1 and 2 above

 

[Snow Leopard]

1. Imagine you had only 1 hour a day to concentrate on an activity that you enjoyed/felt was important (including work), what would you do?
2. If you had a disease that caused this, would you be upset that it is the most neglected disease in terms of funding vs societal disease burden?

 

[biophile]

1. Imagine you had only 1 hour a day to concentrate on an activity that you enjoyed/felt was important (including work), what would you do?
2. If you had a disease that caused this, would you be upset that it is the most neglected disease in terms of funding vs societal disease burden?

1. ... and during that hour of subpar concentration you still have symptoms.
2. ... and deemed irrational extremists for pointing out methodological flaws in the small amount of research that does get funded.

 

[Snow Leopard]

Nice additions.

 

[SilverbladeTE]

Kidney stones, meningitis, scumbags trying to stick you with knives are NOTHING compared to living with this, because as damn bad as they are, those things are short term, where as we have to live with M.E. for the REST OF OUR LIVES.
I say this from experience.

 

[Timaca]

I appreciate everyone's responses. Others can continue to post if you want through Jan 15th, at which point I'll compile the comments and see if my "project" will get off the ground.

Best, Timaca

 

[alex3619]

1. Most of what most doctors know on this topic is obsolete.
2. Most of what we know about ME has been learnt in the last few years.
3. A doctor is either up to date or out of date, there is no middle ground, and we can spot the out of date doctors quickly.