France: ME/CFS in France

[Lolinda]

I don't know if it is the quality of the video, but I do find that those who are severely ill, at least our family member, have severe pallor in the face and in the hands. I note this singer has the same colouring. Thanks for posting.

Resolving that pallor made my PEM go away:

Hi @perrier, thoughtful comment! it reminds me of my own story: while I had to take several steps to leave a fullblown diagnosed ME behind, specifically overcomming PEM was due to eliminating that pallor: I knew that B3 gives rosy cheeks. mine were deadly pale. I didn't have any real deficiency in B3, I think slightly below borderline. I am happy to check if anyone is interested in that. so I started smearing B3 on skin as I didn't tolerate any oral supplements whatsoever. I had to go extremely slow starting with small doses. the effect came only months later: my PEM was gone!! To some of you this may sound voodoo, but to the contrary:
-- B3 does absorb well transdermally: I took the probably most valid vitamin B3 test that is out there at IMD Berlin, which showed huge values, really off limits.
-- no placebo effect, because initially, I didn't even know what caused the resolution of my PEM: on a thread where we discussed this, I was still convinced, that something else, carnitine, has caused it, which I took at the same time. people told me that their experience was that B3 caused this. only by stopping carnitine, I found out later that I was wrong and they were right: stopping carnitine did not make me regress any little bit into PEM again, inspiteof having developed a deficiency. if it was a placebo effect caused by taking carnitine, then I should have lost the healing effect after stopping carnitine.
-- a few others have reported similar experiences that B3 stopped PEM in them
-- apart from simple things like that B3 is turned into NADPH and that B3 makes the immune system more fit, I could imagine something related to the brain: there was some researcher who looked into what causes pem and came up with some insights that some parts of the lower brain miscommunicate with each other. maybe I could still find it. and B3 should help with closing a leaky blood brain barrier, maybe I can still find that too if somebody really wants to know it. if we add up these two maybe it makes sense that B3 specifically stops PEM (in some people)... but my best argument is still plain simply that some other people have reported the same experience about B3
-- on B3, I was able to complete Wim Hof training (see those many fun YouTube videos). Pursuing this vvvvery slowly and incrementally over a year then gave me a boost in mental and bodily fitness, so I am now able to sprint up all the floors of the house with a 20 kg weight in my hands, and no regrets whatsoever next day. ... so no, I do not have any PEM anymore
-- yeah, and I have those desired happy rosy cheeks

... so, is looking a bit better a silly pursuit while facing a grave disease like ME? maybe not after all, but I was simply lucky having stumbled over something that actually works for PEM.
(unfortunately, most of the day I am still lying in bed due to severe POTS.... mama help me... )

 

[lenora]

Terribly sorry to hear of another loss within the ME community. Such a beautiful young woman, with so much to offer the world.

I think doctors everywhere are as puzzled by this illness as we are. Specialists are good b/c they can rule out obvious diseases....and this is necessary.

The most a doctor can do is prescribe meds that are available today for the treatment of our illness(es). Why do some people go downhill faster than others? We can't even answer that one ourselves....this encompasses a huge world of odd symptoms. What makes it even harder it that not all of us have the same symptom, thus making it hard to obtain a diagnosis medically.

At the very least a doctor should maintain professional standards of kindness and respect for the patient. How many people would choose to miss out on so much of their lives?

The answers are few and far between and the only help we have is in paying for research to help overcome this illness. Until something is proven, the hands of both patients and doctors are tied. It has been this way for the many years that I've suffered.

However, to see someone as young and physically healthy looking (and that's another problem we have) as Faustine is just plain sad. My sympathy. Yours, Lenora

 

[Lolinda]

Here's a truly hauntingly beautiful song from a Severe ME patient in France:

Hi @Pyrrhus , this is super beautiful. do you know the one who sings in this video? I have seen on youtube that her name is Claire. is she here on PR?

 

[Pyrrhus]

Hi @Pyrrhus , this is super beautiful. do you know the one who sings in this video?

Yes, it is quite beautiful! I don't know her name, I'm sorry. I don't think she is on PR...

 

[Lolinda]

By the way, there are two ME/CFS organizations in France:

Association du Syndrome de Fatigue Chronique
http://www.asso-sfc.org/
Twitter: https://twitter.com/AssociationSfc

Millions Missing France:
http://www.millionsmissing.fr/
Twitter: https://twitter.com/MillionsMissgFr

I finally called the French CFS Association earlier this year and the best contact the guy offered was a neuro-muscular specialist aware of CFS in Paris. But I fear that's far too specific and narrow.

I am very interested in your experiences with the French CFS association and the French millions missing:
- are there many members in that French CFS association who discuss things online as we do?
- have you ever met the people in real life, in either of these organizations?
I would be so curious to hear more!

(I tried to sign up, but the French CFS association immediately wanted to ask me for money and my impression is that it could easily be that they have very few active members. and I asked why they ask for money when all the other online groups are for free, and they answered that they need money because they produce print materials etc.. what the heck. to me that sounded like a bunch of grandmothers living in the past century. )

I've got to find a doctor abroad, Germany seems like the way to go.

Do you know if they do Autonomic nervous system testing? Small Fiber Neuropathy Diagnosis?

And yes they know about "petite neuropathie de fibre " in French or Small Fiber Neuropathy - through a SUDOSCAN.

I strongly recommend you prof Zgraggen at the Inselspital Berne in Switzerland. in the German part of Switzerland every doctor speaks languages: English and French too, not only German. this professor is motivated because he actually researches the area. he is of interest for:
-- POTS
-- autonomic testing
I haven't asked him about CFS because at that time I had already resolved my CFS.

I received there:
-- tilt table testing
-- sudoscan
-- skin biopsies in the legs to see the density of nerve endings
-- tons of labs
-- maximum professionality and friendliness by the professor himself
he is truly interested in patients, because he publishes in that area and he is very happy to get data. so it is not simply that you want something from him, but he wants also something from you and this is a good basis for the relationship. I always go to researchers for this reason and of course also because they understand their business truly. one time I also took part in a study, and studies are typically not charged to the patient, so that may be a way how you can get testing for free even if you come from abroad and even if you come without a Swiss health insurance.

having said these, Switzerland is of course more expensive than Germany. go to Germany if you get what you need there. the way how I found this researcher is simply to look into Google scholar and add in all the keywords that I am interested in and combine them with Switzerland and with University cities in Switzerland. this takes many hours because a lot of junk turns out because Switzerland has journals published and other stuff that I do not want to find. but I found him and you will find other researchers in other countries this way.

iif money is an issue or you cannot travel with your condition then you can absolutely do these tests at home.
you do not really need a tilt table testing but you can very easily perform important parts of that test at home using a blood pressure meter. I did it many times for myself to see what influences my POTS. it is uncomfortable for me to be upright for this test because I have a severe pots. and a sudoscan isn't difficult to replicate either: just find some scientific papers in which they precisely describe what they do for how much time etc.it is as simple as getting a patient sweat using an infrared lamp and cover his body in plastic and see if the patient sweats everywhere or there are patches without sweat indicating that those small fibers are dead. however, I would have a person nearby for safety, in case you are worried that something could go wrong. for example, I am not sure I would have wanted to do a sweat test at the time when I had ME. this test is very uncomfortable and even so that I didn't have any ME anymore, I had to beg him to stop because I was unable to tolerate the heat for more time. and no, I am not a person who complains easily or is not ready to handle difficulties. but he has confirmed that the test was valid in me.

 

[GreenMachineX]

Resolving that pallor made my PEM go away:

Hi @perrier, thoughtful comment! it reminds me of my own story: while I had to take several steps to leave a fullblown diagnosed ME behind, specifically overcomming PEM was due to eliminating that pallor: I knew that B3 gives rosy cheeks. mine were deadly pale. I didn't have any real deficiency in B3, I think slightly below borderline. I am happy to check if anyone is interested in that. so I started smearing B3 on skin as I didn't tolerate any oral supplements whatsoever. I had to go extremely slow starting with small doses. the effect came only months later: my PEM was gone!! To some of you this may sound voodoo, but to the contrary:
-- B3 does absorb well transdermally: I took the probably most valid vitamin B3 test that is out there at IMD Berlin, which showed huge values, really off limits.
-- no placebo effect, because initially, I didn't even know what caused the resolution of my PEM: on a thread where we discussed this, I was still convinced, that something else, carnitine, has caused it, which I took at the same time. people told me that their experience was that B3 caused this. only by stopping carnitine, I found out later that I was wrong and they were right: stopping carnitine did not make me regress any little bit into PEM again, inspiteof having developed a deficiency. if it was a placebo effect caused by taking carnitine, then I should have lost the healing effect after stopping carnitine.
-- a few others have reported similar experiences that B3 stopped PEM in them
-- apart from simple things like that B3 is turned into NADPH and that B3 makes the immune system more fit, I could imagine something related to the brain: there was some researcher who looked into what causes pem and came up with some insights that some parts of the lower brain miscommunicate with each other. maybe I could still find it. and B3 should help with closing a leaky blood brain barrier, maybe I can still find that too if somebody really wants to know it. if we add up these two maybe it makes sense that B3 specifically stops PEM (in some people)... but my best argument is still plain simply that some other people have reported the same experience about B3
-- on B3, I was able to complete Wim Hof training (see those many fun YouTube videos). Pursuing this vvvvery slowly and incrementally over a year then gave me a boost in mental and bodily fitness, so I am now able to sprint up all the floors of the house with a 20 kg weight in my hands, and no regrets whatsoever next day. ... so no, I do not have any PEM anymore
-- yeah, and I have those desired happy rosy cheeks

... so, is looking a bit better a silly pursuit while facing a grave disease like ME? maybe not after all, but I was simply lucky having stumbled over something that actually works for PEM.
(unfortunately, most of the day I am still lying in bed due to severe POTS.... mama help me... )

I'm curious about this b3 and leaky blood brain barrier thing. Do you have more info on this?

 

[Lolinda]

I'm curious about this b3 and leaky blood brain barrier thing. Do you have more info on this?

https://pubmed.ncbi.nlm.nih.gov/35690118/
"indicating the ability of niacin to restore the BBB integrity"

here I describe my experiences how I got into PEM and how I got out of it:
https://forums.phoenixrising.me/thr...hing-transdermal-b3-the-best-carnitine.80195/
you we'll see that at that time I believed that it was the carnitine, which was the last thing I added in. but some people on the thread said that they got free from post exertional malaise by using vitamin B3, which was the thing I added in before.

may I ask you something too? do you have experiences with French CFS groups? I would like to join a nice group and learn to know some people. so I am curious what groups are there, online and in the real world, and how it feels to be with them and what things they do. my state of health now permits to do such things and even meet people in real life

 

[GreenMachineX]

https://pubmed.ncbi.nlm.nih.gov/35690118/
"indicating the ability of niacin to restore the BBB integrity"

here I describe my experiences how I got into PEM and how I got out of it:
https://forums.phoenixrising.me/thr...hing-transdermal-b3-the-best-carnitine.80195/
you we'll see that at that time I believed that it was the carnitine, which was the last thing I added in. but some people on the thread said that they got free from post exertional malaise by using vitamin B3, which was the thing I added in before.

may I ask you something too? do you have experiences with French CFS groups? I would like to join a nice group and learn to know some people. so I am curious what groups are there, online and in the real world, and how it feels to be with them and what things they do. my state of health now permits to do such things and even meet people in real life

I'm sorry, I'm not in France; I just searched everything related to the BBB and found your post.
Thanks for the info on b3. Glad to hear your doing better now!