• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

Ember

Senior Member
Messages
2,115
Dr DeMerleir has been hired as the new Whittemore-Peterson Institute Medical Director and has now a practicing medical license for Nevada.
That was predicted by Robyn, after ME/CFS Alert, Episode 47: “Ok any guesses which CFS doc it is? My guess De MeirLeir since there are licensing issues.” Good call!
 

cigana

Senior Member
Messages
1,095
Location
UK
Will DeMeirleir leave Belgium behind entirely? He has announced that several times in the recent past.
I think he will reduce his time in Belgium, but will still continue and just pass off the less important workload to other practitioners.

Interesting that they mentioned he was working on Lyme, it really is becoming more and more of an issue.
 
Messages
13,774
Has anyone here read much of Dr DeMerleir's work? I'm speaking from a position of some ignorance, but I've not been that impressed by some of the things I've seen from him. I am generally suspicious of people claiming to be CFS experts though.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
I am not impressed with Dr DeMeirleir nor with WPI.


Quite a few of us here are his patients and have kept up with his research. Re: expert--I don't know how you qualify but this is has been his field of concentration for about 20 years and is really all he does.

He has certainly brought a lot of improvement in me in the last couple of years.

Sushi
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
My definition of an expert is "somebody who is aware of how much they do not know".

Anybody else falls into "ex = a has-been; spurt = a drip under pressure". :p
 

Daffodil

Senior Member
Messages
5,873
he will split his time between nevada and belgium

for me its probably cheaper to go to belgium since i am very far away in toronto and belgium fees/testing is so much cheaper....but the nevada practice will probably be more lucrative and will hopefully result in a lot more research possibilities.
 

Nielk

Senior Member
Messages
6,970
Quite a few of us here are his patients and have kept up with his research. Re: expert--I don't know how you qualify but this is has been his field of concentration for about 20 years and is really all he does.

He has certainly brought a lot of improvement in me in the last couple of years.

Sushi

I am impressed by that, Sushi. Not too may patients can say that about their doctors.
 

SOC

Senior Member
Messages
7,849
I am impressed by that, Sushi. Not too may patients can say that about their doctors.

I think a number of us can say that about our doctors. Those of us fortunate enough to see the top specialists, that is. Part of having "success" with the specialists is understanding that 1) there is no cure, and 2) there's no free lunch.

I'm very happy to have improved my quality of life from feeling-like-death-warmed-over and bedbound to feeling normal and working (at a physically non-demanding job) part-time. I'm not fully functional. I can't do lots of things I want to do. But it's a big improvement.... and I'm continuing to improve.

Two specialists helped me get here over the course of 3.5 years. I had to stick with a difficult treatment. I have to take my meds and supplements reliably 4 times a day. I have to manage my behavior and activity. It was not, and is not, an easy path. It wasn't easy and it wasn't fast. If I was expecting it to be, maybe I would have given up on my specialists and felt that they weren't doing anything for me. Fortunately, I got enough info here at PR (and from my specialists) to understand it was going to be a long, slow process of picking away at details, so I'm happy with the improvements I -- and my daughter -- got from working with top specialists.

I think KDM is one of those top specialists who can help dedicated and determined patients improve their quality of life. I'm thrilled to see him connecting with a research organization dedicated to neuroimmune illnesses.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Quite a few of us here are his patients and have kept up with his research. Re: expert--I don't know how you qualify but this is has been his field of concentration for about 20 years and is really all he does.

He has certainly brought a lot of improvement in me in the last couple of years.

Sushi


Sushi So this will mean less travel for you right Sushi? Great news if so!

GG
 

Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
Has anyone here read much of Dr DeMerleir's work? I'm speaking from a position of some ignorance, but I've not been that impressed by some of the things I've seen from him. I am generally suspicious of people claiming to be CFS experts though.

In my opinion, the list of valid "ME-CFS experts" does not have many names on it. KDM would be close to the top of my list. He has operated as both a clinician and researcher in this field for many years.

Whether or not his theories are correct is a whole other question. If any doctor or researcher had the majority of the questions answered correctly or completely, I would think our cause would be much further along.

I am not a strong supporter or detractor of KDM, but view his contributions as valid pieces of the puzzle. I could probably come up with some minor criticisms of KDM, but on the whole, I believe his contributions far outweigh the criticisms.

For anyone that is interested, I tried to execute a Google search that would give links to all the research papers KDM has participated in. The link is below. Unfortunately, I do not believe this list is all inclusive. I do not see some papers that I know he was part of. Two that come to mind are his work on "folded proteins" and the paper he published recently with the WPI pertaining to the activation of HERV antibodies in the gut of ME-CFS patients.

https://search.knodeinc.com/viewProfile.action;jsessionid=hw3cbiefszyh3fgjyh06v6bm?profile.profileId=B4996489
 

gu3vara

Senior Member
Messages
339
Can anybody give me a ballpark figure of how much it should cost being treated by KDM for 2 years or 3 years let's say? 20000$?

Do you think it's better to see KDM or Dr Enlander, I assume the cost is roughly the same?

Thx!
 

Seven7

Seven
Messages
3,444
Location
USA
I have seen GREAT improvement too. I am not cured but functional, work full time, have social life and Family life. Also in the past few weeks I am not symptomatic much. Just some latic acid pain when I overdo. But all that bad head feeling and just the general malaise is gone!!!! I see Dr Rey. Like the others said, not easy, long process and costly. But when I average been able to keep my job Vs Cost I am still winning!