Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

[Gingergrrl]

Jesse, would you want to add doctors who treat MCAS or mold/CIRS? This might be helpful (or it might complicate the map too much)?!

 

[Jesse2233]

Jesse, would you want to add doctors who treat MCAS or mold/CIRS? This might be helpful (or it might complicate the map too much)?!

Sure, what color do you think I should make the mold and MCAS docs ? Also who are some examples of MCAS drs?

I have updated the map w/ people's suggestions

 

[Gingergrrl]

Sure, what color do you think I should make the mold and MCAS docs

The mold docs could be in black (in honor of black mold ) and no idea re: the color for the MCAS docs!

Also who are some examples of MCAS drs?

There are many MCAS docs in the US (and not sure that all are seeing new patients) but off the top of my head some of them are: Lawrence Afrin, Dr. Theoharides, Mariana Castells, Terry Chin, Anne Maitland, Andrew White.

 

[Diwi9]

Also, ME/CFS specialist Dr. Paul Cheney in Asheville, NC.

 

[Gemini]

I thought I heard Podell retired.

You're correct @duncan Dr. Podell has retired, and I just spoke to him and he isn't aware of anyone in New Jersey right now. So his name can be taken off the map.

Cliinical Neuropsychologist, Dr. Gudrun Lange, who tests ME/CFS patients is in New York City.

 

[Gingergrrl]

Also, ME/CFS specialist Dr. Paul Cheney in Asheville, NC.

Didn't Dr. Cheney retire or am I totally confused?

 

[justy]

Dr Horowitz, lyme Dr. Hyde Park, N.Y

I second the idea of MCAS Drs - i can give you a good list of them for UK, @Gingergrrl has a good list for US.

doctors such as KDM included with the science based doctors

Here we go again.
Professor Dr De Meirlier is a qualified internist, researcher, cardiologist, lectured for many years at Brussels University, co-authored the ICC and is very up to date with current research.
Can you name me a particular treatment he gives patients that you do not consider science based?

 

[Hip]

@Jesse2233, your map-creating efforts I found inspiring. They are great maps.

In case you are considering transferring your map to a Google Map, I've quickly set up a starter Google Map HERE, in which I added just a few of the ME/CFS doctors.

The advantage of a Google Map is that you can group items in layers of the same subject matter: so I set up several layers (more can be added):

• ME/CFS Specialists (Famous) — this would be for the internationally-renowned ME/CFS doctors
• ME/CFS Specialists (Local) — lists of local ME/CFS doctors here, here, here and here. Oz doctors here.
• Lyme Disease Specialists — list of Lyme specialists here.
• ME/CFS & Lyme Naturopaths
• CIRS Specialists (chronic inflammatory response syndrome); list of CIRS doctors.
• POTS Specialists — lists of doctors here, here and here.

You can switch on and off the viewing of any particular layer by clicking on the tick box next to the layer name.

If you like this Google Map idea, I can add your Google account email (assuming you have one) to the list of users that can edit the map, and then you will be one of the people who co-own and can edit the map. It's also possible to add other editors if they have a Google account, in case others take interest.

It's fast and easy to add new doctors to the map: all you do is enter the doctor's name and address in the search field at the top of the page that appears once you are in edit mode (eg: Dr Lucinda Bateman 1002 E S Temple, Salt Lake City, UT 84102, USA), and then Google will usually find that person's full details (often automatically finding their phone and website), and will locate them on the map. You just then need to click on "+ Add to Map" to confirm.

I can help out by adding some of the ME/CFS doctors to the map.

These maps sit in your Google Drive page, so you can also make copies of them, in case you want to play around with different schemes.



I found an existing Google Map for Lyme doctors here (nearly 90 doctors on that map), so whether it is worth duplicating their list of Lyme doctors, or just restricting your map ME/CFS doctors, is something to consider (it's not just the time it takes to add 90 doctors to the Google Map, but also the fact that it may make keeping the map up to date more difficult, when doctors retire or change address).



Of course if you prefer the clarity and simplicity of your own nice and clean map drawings, it may be a better idea just to continue with that. Your maps look great.

 

[Gingergrrl]

Wow, this map is going to be a rockstar masterpiece @Jesse2233 and @Hip! It will really help a lot of people in the future

 

[Hip]

Actually I think an ultra-comprehensive map that covers all these different medical areas might be best created as a joint effort with other PR members, otherwise it will be too much work for one individual.

If we had several volunteers, each responsible for compiling a list of doctors in each specialty (eg Lyme, POTS, MCAS, etc), providing the name, address and a brief one or two sentence description of the doctor's methods of treatment, then that could be more easily incorporated into a map.

 

[ivorin]

Dr Horowitz, lyme Dr. Hyde Park, N.Y

I second the idea of MCAS Drs - i can give you a good list of them for UK, @Gingergrrl has a good list for US.



Here we go again.
Professor Dr De Meirlier is a qualified internist, researcher, cardiologist, lectured for many years at Brussels University, co-authored the ICC and is very up to date with current research.
Can you name me a particular treatment he gives patients that you do not consider science based?

Nexavir seems somewhat fishy.

 

[Hip]

Nexavir seems somewhat fishy.

It does seem suspect, on the grounds of efficacy: I have never come across any ME/CFS patient on these forums who made a substantial improvement on Nexavir / Kutapressin (although there are reports of people improving on Valtrex / Valcyte). Dr Derek Enlander uses Nexavir too, and says 30% of his patients improve on Nexavir, but he does not quantify those improvements.

KDM says that 70% of his patients respond well to Nexavir, achieving a 20 point increase on the Karnofsky scale in 6 months. I find that hard to believe, as a 20 point increase is a major improvement (it's the equivalent of moving up one level on the ME/CFS scale of mild, moderate and severe).

 

[ivorin]

@Hip there's another angle I like to look at it at. Nexavir or 4ME as Kalida sells it as is just a blend of amino acids and peptides, put even more simply, it's pig liver extract. Now if that's all it is, wouldn't looking at amino and organic acid levels and snp's be beneficial before pumping up additional aminos and peptides. Wouldn't being a bit more specific with your targeting be the right way to go about it, the safe way?

Plus the efficacy you already mentioned.

 

[Hip]

@ivorin, Nexavir has been shown to have antiviral properties against EBV and HHV-6 in vitro (although that does not prove it has in vivo antiviral effects). Plus it is considered to be an immunomodulator. There was also a study apparently showing efficacy for ME/CFS. That's the basis of its use in ME/CFS. But as I say, I've yet to come across anyone raving about Nexavir's benefits for their ME/CFS.

 

[ivorin]

@ivorin, Nexavir has been shown to have antiviral properties against EBV and HHV-6 in vitro (although that does not prove it has in vivo antiviral effects). Plus it is considered to be an immunomodulator. There was also a study apparently showing efficacy for ME/CFS. That's the basis of its use in ME/CFS. But as I say, I've yet to come across anyone raving about Nexavir's benefits for their ME/CFS.

I am aware of it, but when you think about it, a blend of amino acids and peptides would indeed have that effect too,in the right "metabolic context", in the right body. It's fun stuff really, Nexavir is

 

[justy]

It does seem suspect, on the grounds of efficacy: I have never come across any ME/CFS patient on these forums who made a substantial improvement on Nexavir / Kutapressin (although there are reports of people improving on Valtrex / Valcyte). Dr Derek Enlander uses Nexavir too, and says 30% of his patients improve on Nexavir, but he does not quantify those improvements.

KDM says that 70% of his patients respond well to Nexavir, achieving a 20 point increase on the Karnofsky scale in 6 months. I find that hard to believe, as a 20 point increase is a major improvement (it's the equivalent of moving up one level on the ME/CFS scale of mild, moderate and severe).

That would be of his patients who are prescribed it- it’s not an across the board treatment for his patients. I know some patients who love it. I’ve never been prescribed it.

But we are way off topic, so I suggest this conversation is taken over to one of the many threads on Dr De Meirleir.

 

[Gingergrrl]

But we are way off topic

I agree and think we should focus on the map for this thread (which is a great idea and I believe will help many people in the future)! I think we should do a map for the US and the UK and we could divide them up into smaller sections however @Jesse2233 and @Hip want to do it.

 

[Jesse2233]

I like the google maps idea @Hip

Maybe have two versions, one as a clean and simple jpg for patients with cognitive difficulties and another with google maps integration including layers for local and globally renowned specialists

 

[Hip]

Maybe have two versions, one as a clean and simple jpg for patients with cognitive difficulties and another with google maps integration including layers for local and globally renowned specialists

That's a good idea, and in fact a simple jpg map might be better in some ways: I've noticed that after I entered most of the internationally famous ME/CFS doctors on the Google map, the points on the map start to become a little crowded, so that these points begin to obscure each other, and you cannot read the doctors' name unless you zoom right into a particular area of the map.

 

[Jesse2233]

Updated version 3 with more doctors including CIRS and MCAS