France: ME/CFS in France

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I'd like to share my summarized experience of dealing with CFS in France.

I'll save you the socio-cultural analysis of how France is often late to adapt and that there's no doubt for a CFS sufferer here a lot of the literature/expertise/treatments etc will come from the english-speaking world.

I was hospitalized 3 full days years ago, followed by an internist, only to be told as a conclusion I needed 1 month of massage therapy. Ahem.

Medical doctors either treated me with little attention, or worse were flat out rude and aggressively dismissive and offered no help, or were puzzled and clueless with their advice. The standard medical world is extremely rigid here, I think more so than in the anglo-sphere.

I saw two chronic infection specialists but none of the ABiotic treatments worked for me, but at least they were happy to prescribe full AB treatments (usually something of a taboo in the country).

I saw an MD tolerant of the CFS diagnosis, but the best he offered after months was supplementation and eating an anti-inflammatory diet.

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.

Most of the time, the "research" articles or comments on forums or by doctors seem to be completely speculative, almost not real, almost with the underlying notion there is no possible diagnosis but what the hell here's a bit more stale information.

How would you say this description compares to where you live ? And: keep your chin up.
 
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In the U.S., I have a good primary doctor who diagnosed me with SEID (he likes that name)...but not many tests were run...I fit the classic ME criteria quite nicely.

But they don't- get into details...he isn't up on the latest.....(like the whole mechanical theory, CCI etc., he knows nothing about). Also, my private insurance is good but denies most prescriptions...so I take only 1 thing (LDN) and they won't pay for it. Provigil...they denied me that as well.

So the doctors have no interest in calling the insurance and arguing over denials. I watched them run my doctor through SIX people, all of whom are paid to deny requests, and arent' doctors. It took 35 minutes of his time; he answered the same set of questions six times.

And we were denied. I watched him lie- to get past irrelevant questions.

Our system- does n;t work. If you broke something, or got cancer, maybe you'd be ok...maybe you;d get help.
 
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I want to mirror my experience in France.

It's been a lengthy process between immunologists, specialists, generalists, gastro-enterologists, an integrative health doctor, and a UK + Spain visit for a cranio-cervical instability diagnosis.

I was eventually turned down outright or dismissed by at least two specialists in France -- the immunologist from Antibes referred me to a specialist/researcher in one of the main hospitals in Marseille. Both eventually dismissed me on both my results (e.g. my CD4 count is normal but my CD8 are not), as well as my conjectures. There is no basis for thinking ME/CFS yet, here.

Things took a turn for the better when I went more basic. Instead of leading with condition, I thought about areas leading up to ME/CFS (gut and micronutrients, metabolic pathways, inflammation). I was referred by a generalist to a functional doctor in Nice, and there he managed to test me for CRP (mine was elevated). I took that and shared online, and was advised to see a rhumatologist.

I think that was the most substantial and reliable thing I've done in the last ten years. I found another integrative doctor by searching for rhumatologists in Cannes, which is where I live. He tested me for heavy metals through a German lab. He also advised an anti-inflammatory diet. I am now working with a gastroenterologist and eventually will see a rhumatologist in the Centre Hospitalier Universitaire of Nice.

Something really important in my case: I had tested for anti-nuclear antibody, rheumatoid factor, HLA-B27, and all of these came back negative.

Virtually all of my symptoms parallel or mimic forms of autoimmunity (joint and hip pains, terrible dry eye syndrome with floaters, fatigue, and inflammatory bowel, cranio-cervical instability and mild scoliosis). The problem is there is no diagnosis thus far, no etiology, only a diagnosis of symptoms.

So I have to tackle whatever this is from two ends: via symptoms and/or via labs results and trial runs of certain medication (prednisone has alleviated some of my symptoms but can't take it indefinitely). Specialty areas of medicine like immunology have not been of much help so far.
 
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Messages
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France
I want to mirror my experience in France.

It's been a lengthy process between immunologists, specialists, generalists, gastro-enterologists, an integrative health doctor, and a UK + Spain visit for a cranio-cervical instability diagnosis.

I was eventually turned down outright or dismissed by at least two specialists in France -- the immunologist from Antibes referred me to a specialist/researcher in one of the main hospitals in Marseille. Both eventually dismissed me on both my results (e.g. my CD4 count is normal but my CD8 are not), as well as my conjectures. There is no basis for thinking ME/CFS yet, here.

Things took a turn for the better when I went more basic. Instead of leading with condition, I thought about areas leading up to ME/CFS (gut and micronutrients, metabolic pathways, inflammation). I was referred by a generalist to a functional doctor in Nice, and there he managed to test me for CRP (mine was elevated). I took that and shared online, and was advised to see a rhumatologist.

I think that was the most substantial and reliable thing I've done in the last ten years. I found another integrative doctor by searching for rhumatologists in Cannes, which is where I live. He tested me for heavy metals through a German lab. He also advised an anti-inflammatory diet. I am now working with a gastroenterologist and eventually will see a rhumatologist in the Centre Hospitalier Universitaire of Nice.

Something really important in my case: I had tested for anti-nuclear antibody, rheumatoid factor, HLA-B27, and all of these came back negative.

Virtually all of my symptoms parallel or mimic forms of autoimmunity (joint and hip pains, terrible dry eye syndrome with floaters, fatigue, and inflammatory bowel syndrome, cranio-cervical instability and mild scoliosis). The problem is there is no diagnosis thus far, no etiology, only a diagnosis of symptoms.

So I have to tackle whatever this is from two ends: via symptoms and/or via labs results and trial runs of certain medication (prednisone has alleviated some of my symptoms but can't take it indefinitely). Specialty areas of medicine like immunology have not been of much help so far.
Hey man, nice to see someone a bit similar to me here. I'm in Draguignan.
In my original post, when I mentioned the 3 day hospitalization for tests, it was in the CHU of Nice as well. It was a joke. During the 3 days: one time it was regular blood tests. Another day it was the physical test (running on a treadmill). Another time, it was a freakin psychologist and her associate asking me generic questions. And the internist who followed me appeared once and disappeared just as fast and I never got to ask any questions. Those CHU ("top" hospitals in France for the ppl reading) are a bit of a farce, they're large businesses and all they do is chain work.

I'm currently in contact with the "Hopital Europeen" in Marseille. The internist there (CFS-friendly) told me they're about to open a section just for CFS treatment. Not sure when but some time in the near future. Not hoping for much, but ... eh. I've got to find a doctor abroad, Germany seems like the way to go.
 

pattismith

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Hey man, nice to see someone a bit similar to me here. I'm in Draguignan.
In my original post, when I mentioned the 3 day hospitalization for tests, it was in the CHU of Nice as well. It was a joke. During the 3 days: one time it was regular blood tests. Another day it was the physical test (running on a treadmill). Another time, it was a freakin psychologist and her associate asking me generic questions. And the internist who followed me appeared once and disappeared just as fast and I never got to ask any questions. Those CHU ("top" hospitals in France for the ppl reading) are a bit of a farce, they're large businesses and all they do is chain work.

I'm currently in contact with the "Hopital Europeen" in Marseille. The internist there (CFS-friendly) told me they're about to open a section just for CFS treatment. Not sure when but some time in the near future. Not hoping for much, but ... eh. 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?
These are very important steps for serious medical investigations.
I believe the only good place to go for that is either Toulouse, nor Paris
 
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Do you know if they do Autonomic nervous system testing? Small Fiber Neuropathy Diagnosis?
These are very important steps for serious medical investigations.
I believe the only good place to go for that is either Toulouse, nor Paris
autonomic they seem to but I reckon it wouldn't be part of my hospitalization schedule there as those hospitals are rigidly compartmentalized and it's rare one area bleeds into another, as per the conventional Western medicine method. The ppl who'd follow me, a CFS sufferer, would be internists mostly. And yes they know about "petite neuropathie de fibre " in French or Small Fiber Neuropathy - through a SUDOSCAN.

Thx for pointing those out, will investigate them more myself.
 

pattismith

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autonomic they seem to but I reckon it wouldn't be part of my hospitalization schedule there as those hospitals are rigidly compartmentalized and it's rare one area bleeds into another, as per the conventional Western medicine method. The ppl who'd follow me, a CFS sufferer, would be internists mostly. And yes they know about "petite neuropathie de fibre " in French or Small Fiber Neuropathy - through a SUDOSCAN.

Thx for pointing those out, will investigate them more myself.
Did you have a SUDOSCAN yourself?
The problem with this test, it's not always sensitive enough to detect SFN in all patients:
https://www.futuremedicine.com/doi/abs/10.2217/nmt-2019-0026
 

Pyrrhus

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Pyrrhus

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pattismith

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Sadly, a French actress/singer with ME passed away recently at the age of 31.

RIP Faustine Nogherotto.
Thank you @Pyrrhus , this article explains well the ME challenge here in France.

ME and Fibro just doesn't exist here. And having the diagnosis doesn't help the ill people. These are the reasons why I don't have any official diagnosis and I don't want one.

ME and Fibro are just syndromes and the bigger challenge is to keep looking for neurologic and auto-immune conditions that can underly or complexify the situation.


We were talking about her illness and the treatments she had. Or rather that she did not have since the disease is not recognized in France and doctors are not trained to treat ME. Like all patients, his medical follow-up was not good. Faustine clearly suffered from the difficulty of making her illness understood. In hospitals, those suffering from ME are diagnosed with psychological illnesses, functional somatic disorders and even anorexia nervosa. It is very complicated to get correct treatment.
 

gbells

Improved ME from 2 to 6
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How would you say this description compares to where you live ? And: keep your chin up.
In the USA MDs aren't well versed in functional medicine. They would visit UpToDate, read a brief summary of ME (CFS) and propose the recommendations. Diagnosis is generally evidence-based but they are not knowledgeable of treatments that specialists use (D-ribose, etc).
 
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Thank you @Pyrrhus , this article explains well the ME challenge here in France.

ME and Fibro just doesn't exist here. And having the diagnosis doesn't help the ill people. These are the reasons why I don't have any official diagnosis and I don't want one.

ME and Fibro are just syndromes and the bigger challenge is to keep looking for neurologic and auto-immune conditions that can underly or complexify the situation.
Yes it's a major, major struggle to find anyone in the whole country that really knows about CFS. Some claim to, but then will offer a very ordinary treatment for it. I live in the Southeast and I've been in contact with the Hopital Européen de Marseille for some time, I did find some sleep apnea in the test results and will treat that, but the "best news" was they'll open a section soon that's dedicated to CFS cases. I'm only half convinced, at best, but at least it's something. The doctor told me the main method used there would be hypnotherapy, strangely enough.
 

Pyrrhus

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Good news from France!

On 7 May, Millions Missing France was invited to speak with the French Minister of Health Olivier Véran!
(The topic was Long Covid, but still...)


Translation:
Millions Missing France said:
We thank the Minister of Health for his attentive listening and his commitment to this major cause.
Hundreds of thousands of sick people could become disabled from COVID19 infection, even minor infections, if they are poorly taken care of.

The first studies concerning the prolonged symptoms of COVID19 are worrying and show significant overlaps between ME symptoms and Long Covid, including PEM. We do not yet know how many of them will trigger ME.

We alerted the Minister of Health to the systematic prescription of exercise and requested that the symptom of PEM be taken into account in treatment as well as in studies and research. We have discussed the therapeutic strategy of pacing.

We have insisted on the importance of the official recognition of the post-viral syndrome and Myalgic Encephalomyelitis so that our health authorities can take into account scientific studies, treatment recommendations, and assessment tools.

It would be a considerable gain in time and efficiency to draw on the achievements of decades of research on ME. The Minister of Health affirmed his involvement in the issue of Long Covid and took up several proposals from the speakers on research, multidisciplinary care, communication on the subject, & appointment of 1 member of the ministerial cabinet, a single point of contact for Long Covid.