Should I start a ME/CFS clinic?

[Countrygirl]

I think it is a terrific idea, if you can find some colleagues to help shaare the burden. There is a huge need for clinics run by doctors who understand the severity and nature of the illness. I wish you the very best and hope you can achieve this.

Let us know when you are in the position to start a chain of clinics with some outposts in the UK. You would be welcomed with open arms.

 

[Jesse2233]

Health permitting I think you definitely should

You could use it as an opportunity to replicate research findings in clinical practice and help a lot of people with treatments most doctors don’t use like IVIG, regular saline, and apheresis

Simultaneously treating POTS, MCAS, infections, and autoimmunity would likely have the biggest positive impact on outcomes

 

[jpcv]

Thank you all , the positive feelings I got from your response, as well as the advices regarding balancing work with my health condition wee great!
I can´t answer to everyone now, but some general observations

-IVIG is very expensive, covered only by health insurance in very selected cases, not ME.
-The ampligen thing : I would like to hear some experience from Argentina. We can´t get it here-
-ME is not recognized as a disabling disease as far as I know here, I think fibromyalgia is not recognized either, there was a discussion on Facebook recently, I´ll have to check it out.

 

[jpcv]

I´ll keep elaborating this idea, this is not something for now but maybe for the near future.
I have this weird idea of traveling to some places in the country to meet some patients that I know from social media/youtube channel, I´ve talked briefly to some of them and they were supportive.
If this interaction with patients work, then I can take another step and activate the plans for the clinic.

 

[Sushi]

Woul you go to a doctor like me, MDwithME, who is studying and learning how to treat PWME?

I was a patient of a dysautonomia specialist who himself had dysautonomia and POTS. He had had to retire from his practice as an Internist because of his illness and was on disability. He did go back to medical school to study the autonomic nervous system under the guidance of another dysautonomia specialist.

He was extremely helpful to me and his other patients, but his life was extremely difficult as he usually overextended himself in order to try to help his patients and his own health suffered. He also had to cancel a lot of appointments due to his own illness. So it would be walking the razor's edge: you would be in a position to fully understand and validate your patients, but you would have to be cautious to guard your own health. Best wishes in whatever you decide.

 

[LizAtRest]

It would be amazing if doctors who were not only well versed in the treatment of ME but also had experienced it, like you, could TRAIN, EDUCATE AND ENLIGHTEN OTHER DOCTORS around the country. I see events and presentations happening more and more but we still face the same wall of disdain at the Drs office.

 

[Mel9]

@jpcv I have only just seen this today? Curious to know what was your final decision
?

 

[gbells]

Hi everyoene here at PR, to make a long story short, I´m 51 years old, a Medical Oncologist and I´ve been sick for almost three years.
I´m still working, though I had to reduce working hours due to my condition.
There are no ME clinics or doctors here in the part of the country where I live and I believe that probably not in the whole country.
I was thinking if it´s Worth to invest in a ME clinic, not only for financial purpouses but also to help patients who are lost, without specialized care and also for the challenge, wich I aprecciate very much.
I have to fator in time, Money, my health status and so on...
What do you think?
Woul you go to a doctor like me, MDwithME, who is studying and learning how to treat PWME?
No?
answers, please

Yes as long as your charts are being supervised by a more experienced MD to make sure that you don't miss anything until you pass a level of proficiency. Also, be science based and don't just pick treatments based on rumors.

 

[Insomniac]

If you clinic gives plamaphoresis or IVIG, I would be interested and so would a lot of patients

 

[Judee]

Does your country allow you to do tele-medicine?

After you see the patient for the first appointment and then say maybe once per year, you could schedule most follow up appointments to fit your schedule and your own health needs.

Lots of ME/CFS patients have inverted circadian rhythms anyway as well as being mostly housebound so talking to a doctor at night over the internet would work for a lot of us and maybe be better for your health as well.

I also agree with having partners who could help you though. Don't try to do this all on your own.

 

[jpcv]

@jpcv I have only just seen this today? Curious to know what was your final decision
?

I have postponed my decision because I went through a 3 month long bad phase of the disease last year.
Although I´m better off now, I still haven´t made my mind about it.

 

[Mel9]

Take care of yourself

Best not to rush into something that could harm the limited health you have left.