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Meirleir Poll

I have been treated by Dr. Kenny de Meirleir and:

  • I consider myself cured!

    Votes: 0 0.0%
  • I have made dramatic improvements

    Votes: 3 13.0%
  • I have made moderate improvements

    Votes: 13 56.5%
  • it dit not help me at all. I did not get worse either

    Votes: 1 4.3%
  • I have gotten somewhat worse

    Votes: 1 4.3%
  • I have gotten much worse

    Votes: 3 13.0%
  • my health was seriously damaged

    Votes: 3 13.0%

  • Total voters
    23

mattie

Senior Member
Messages
363
Looking for best treatment options / doctors in the proximity of the Netherlands, one obviously comes across Dr. Kenny de Meirleir in Belgium.
I seriously consider to start seeing him, although there seems to be a lot of controversy about his treatments.

He himself speaks about a 70% succes rate with his Me/Cfs patients which seems very high to me.
I have been looking for a poll that would somewhat confirm this and could not find it.

There must be a lot of people on this forum that were treated by De Meirleir.
If you are one of them please take this poll. Thanks.

If you find that there are poll options missing please let me know.
If you would like to share more on your De Meirleir experience please do!
 
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Thinktank

Senior Member
Messages
1,640
Location
Europe
The members on this forum are no representation of KDM's full patient list. Members on this forum are usually sicker than the average Joe and are not easy to treat / need longer treatment, so results might be skewed.
Also, forums are mostly used to complain, patients who have been cured or at least have recovered in such a way that they can live a fulfiling life do not post on PR very often....

I understand you're looking for answers, but a poll is a bad idea, just my 2 cents.
 

BurnA

Senior Member
Messages
2,087
The members on this forum are no representation of KDM's full patient list. Members on this forum are usually sicker than the average Joe and are not easy to treat / need longer treatment, so results might be skewed.

Memebers on this forum should be much sicker than the average Joe. The average Joe is out there having a life, this is a forum for ME CFS patients - why would any comparison be made to the average Joe. ?
Forum members presumably are the exact type of patient the opriginal poster wants to know about.
 

ErdemX

Senior Member
Messages
113
Location
Istanbul
Well, while I don't think the poll should be closed or removed, it makes sense that many people who got cured wouldn't be killing time here.

I'm sure I won't come here anymore if I get cured.

If I had dramatic improvements, which would mean that I can spend time outside often, I would visit here rarely.
 

mattie

Senior Member
Messages
363
@Thinktank

I appreciate your point and I am fully aware this poll will not represent all KDM's patients.
However I expect everyone here is perfectly capable of interpreting the results in their proper context.
 

mattie

Senior Member
Messages
363
Memebers on this forum should be much sicker than the average Joe. The average Joe is out there having a life, this is a forum for ME CFS patients - why would any comparison be made to the average Joe. ?
Forum members presumably are the exact type of patient the opriginal poster wants to know about.
That is correct, thank you.
 

Daffodil

Senior Member
Messages
5,875
i wanted to vote moderate but accidentally voted dramatic.

there is another forum in dutch(?) that has a lot more DeMeirleir patients. I have posted there before, using google translate:

http://me-behandling.com/

I read once that getting much better (if possible) takes 1/2 the duration of your illness. At the rate I am going, that sounds about right.
 

Hip

Senior Member
Messages
17,865
@mattie
Your poll answer options that indicate improvements in health status following treatments from KDM will probably accurately represent good responses to treatment. However, in patients who had recently developed ME/CFS just a few years prior to seeing Dr De Meirleir, their getting worse following treatment may just be a result of the natural progression of ME/CFS, since ME/CFS can get worse and worse in the first few years of the disease.

And it's probably in the first few years with disease that patients will go to see an ME/CFS specialist like KDM.

Ideally you would want to restrict the poll to patients who had been stable in their symptoms for several years before seeing KDM. That way, when there is an improvement or worsening in symptoms following treatment, it's more likely to be a result of the treatment, rather than just due to the natural course of the disease.
 
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snowathlete

Senior Member
Messages
5,374
Location
UK
In my experience of polling people manually on here a few years back on this question, the majority were patients who had improved and had good things to say, so I don't think we're likely to see a skewed result of negative responses. It's an important thing to be able to ask questions like this and for both sides to feel able to speak up. I was harmed badly, I now have IBD in addition to ME because of treatment under KDM. I don't know how many others have been harmed. Others have improved under him.
 

dadouv47

Senior Member
Messages
745
Location
Belgium
I don't see any reason not to do a pool like this one, but I also agree with Thinktank about the fact that those who improved dramatically usually don't come here anymore ( or very rarely)

Without giving too much details, It would also be interesting to understand what were the experiences of those who had success AND failure stories, For example, it would be interesting for those who had no improvement from his treatment to know how long they kept on KDM's treatments plans, to know if they were taking everything he was giving it to them ( if they gave up too early or if they sticked with him during years). Someone who did everything KDM asked for more than a year and had no improvement has more value in this pool than someone who tried his treatment for 4 months or wasn't taking all meds he was prescribing and answered the same thing.
And It's also interesting to know if people had improvements (or not) independently of the time being sick ( if some had improvements after being sick for a long time)

Anyway, the pool has his advantages and people can answer anonymously to it, but It's a little bit biased and I'm not sure it could be helpful without prior patients giving some more details.
 
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geraldt52

Senior Member
Messages
602
I think the vast majority of doctors grossly overstate their success rates in illnesses like CFS.

Have you ever quit seeing a doctor, even one that you have seen for a significant length of time, and then had their office contact you, to see how you responded or how you are doing (since you didn't come back)? For me, never. If you don't come back, and don't threaten to sue them, then they just assume that their treatment was successful.

I've often wondered is there absolutely no "professional curiousity" left in the world? As an engineer, if I was working on something that was outside the norm I would follow up, no matter what, to find out what the actual result was of what I had done/proposed. It would have been unthinkable to me to just assume that something that wasn't 100% tried and true had in fact worked. How would you know what works if you never consistently follow up...and hear the good, the bad, and the ugly?

When anyone claims a 70% success rate with ME/CFS, my BS alarm absolutely rings off the wall...and I have a difficult time believing anything more that is said.
 

Hip

Senior Member
Messages
17,865
I was harmed badly, I now have IBD in addition to ME because of treatment under KDM.

Could you elaborate a bit on that? Which inflammatory bowel disease did you get, and what KDM treatment do you think triggered it?
 

frederic83

Senior Member
Messages
296
Location
France
I don't know if a recovery story from KDM exists. I'm talking about remission, not cure.
A slightly better response is not a remission for me, but doctors tend to confuse both.

I think the vast majority of doctors grossly overstate their success rates in illnesses like CFS.

Definitely. Usually, a doctor or a researcher will publish his findings if his treatment had some success. There are not a lot of published treatments, and the ones I saw, when I read it in details, are not really brilliant. Generally, the PWME that get a good response with a treatment are the ones that are sick for less than 3 years and with the treatments are able to work. It does not mean a remission, just that they can enjoy a decent life, so that they can get back 70%-80% of their total energy (100% being perfect health). A 90% recovery is quite rare and usually require a life treatment. Some forms of CFS are treatable, though. But that is not the core of the patients.

I've often wondered is there absolutely no "professional curiousity" left in the world?

I'm also chocked that the doctors don't track the patients' health. What bothers me is also the lack of cooperation between the doctors/researchers. Actually, I think the cause is that they don't know how to treat it and try various treatments in the hope to get a good response. Each doctor has his own views on this disease and it is not helping the patients.
There is no magic tricks to find a cure: a lot of money and a bunch of good researchers. We don't have the energy to fight for that. The weaks are left behind. I don't think an isolated researcher will find something on his own.
 

Hip

Senior Member
Messages
17,865
When anyone claims a 70% success rate with ME/CFS, my BS alarm absolutely rings off the wall...and I have a difficult time believing anything more that is said.

A 70% success rate does not in itself tell you much. If success were defined as producing a minor improvement in ME/CFS symptoms or better, then I don't think think it would be that difficult for a ME/CFS doctor to attain a 70% success rate. I would think that the majority of patients who spend time reading and trying out the treatments details on this forum will find at least one treatment that improves symptoms.


I am interested in getting patients on this forum to more accurately qualify their improvements. Often on these forums you will see patients say things like "treatment X made me 30% better", or "I am back to 80% functioning after taking treatment X". But I find these statements largely meaningless. They are are not really a good objective gauge of the degree of improvement attained.

There are various scales of ME/CFS symptom severity which can be used to more accurately gauge improvements as a result of treatment, such as the Karnofsky sale, Dr Martin Lerner's Energy Index Point Score, and Dr @charles shepherd's ME/CFS Disability Scale.

I find the the very simple scale of mild, moderate and severe a good one. Any treatment that can get you up one level on these scale I consider to be a major improvement.
 

geraldt52

Senior Member
Messages
602
In 30+ years I've many times gotten strikingly better, and strikingly worse, for periods of time, from doing nothing whatsoever. Relapse and remission are literally hallmarks of the illness. If doctors don't follow and test all patients given and not given treatments over a considerable length of time, then to claim anything in terms of success just strikes me as an exaggeration of what is known. Improvements could just be a remission that would have occurred with or without treatment.