Re: Stop Going to Those Doctors (SURVEY related)

[Guest guest]

silo@... writes:

> I had to state the obvious, but the most powerful thing you can do is stop

> going to doctors that are disrespectful or unknowlegable about MCS.

Not obvious or appropriate. Though I understand your expressed idealism,

effective change will not happen unless we consider the actual needs and

situations of people with MCS, as well as those of physicians.

In other words, I believe your sentiment to be an unhelpful, unrealistic and

inappropriate fantasy for many people. I know it is for me. (And not all

people can go to an EI doc.)

I don't " go to those doctors " anymore, but I do have a primary care doctor

with the only type of insurance I can get and there is only one I can see who

has any willingness to sign PCP paperwork regarding my disability. I see him

rarely and the rest of the time see my EI doctor. And I can tell you, they both

could use an educational brochure for various reasons.

Also ... you wrote:

> The most important thing is to have a perfume-free, fragrance-free office

> for accessbility. A sign at the reception desk is all they need. " For the

> health of our patients we ask that you be fragrance-free. "

This is more along the lines of the input we're looking for, however, a sign

about fragrances isn't all that's needed. Many doctor's offices and staff

need quite a bit of direction and motivation to make themselves safer, and the

patients aren't even close to the only problem.

Beyond that, FAR more than fragrances are a problem. We intend the brochure

to address issues like attitudes, pesticides, treatments, testing, etc.

I would guess that you did not email me through the list because you knew

your response was antagonistic. Perhaps sticking to the list unless invited

backchannel is in order.

[Guest guest]

silo@... writes:

> I had to state the obvious, but the most powerful thing you can do is stop

> going to doctors that are disrespectful or unknowlegable about MCS.

Not obvious or appropriate. Though I understand your expressed idealism,

effective change will not happen unless we consider the actual needs and

situations of people with MCS, as well as those of physicians.

In other words, I believe your sentiment to be an unhelpful, unrealistic and

inappropriate fantasy for many people. I know it is for me. (And not all

people can go to an EI doc.)

I don't " go to those doctors " anymore, but I do have a primary care doctor

with the only type of insurance I can get and there is only one I can see who

has any willingness to sign PCP paperwork regarding my disability. I see him

rarely and the rest of the time see my EI doctor. And I can tell you, they both

could use an educational brochure for various reasons.

Also ... you wrote:

> The most important thing is to have a perfume-free, fragrance-free office

> for accessbility. A sign at the reception desk is all they need. " For the

> health of our patients we ask that you be fragrance-free. "

This is more along the lines of the input we're looking for, however, a sign

about fragrances isn't all that's needed. Many doctor's offices and staff

need quite a bit of direction and motivation to make themselves safer, and the

patients aren't even close to the only problem.

Beyond that, FAR more than fragrances are a problem. We intend the brochure

to address issues like attitudes, pesticides, treatments, testing, etc.

I would guess that you did not email me through the list because you knew

your response was antagonistic. Perhaps sticking to the list unless invited

backchannel is in order.