A nice comment on MEA Facebook from my colleague Dr Ellen Goudsmit, who comes from Holland: I'm sure all those knowledgeable about ME would say the same thing. This is authoritative information. Top notch. I just wanted to inform others that with my scientific background, your analysis made perfect sense. Actually, as a patient who knows a lot of other patients, it made sense. Hope I didn't come across as an opinionated self-important person or anything. I didn't mean to. I just heard someone summarise the state of knowledge without bias and thought I'd pass that on. So many scientists think differently. I'm with you! That's not to reassure, just let others know they can trust this info.
Isn't it about time you retired Charles? If Melvin Ramsay was still around. Id imagine he would be utterly disgusted that you have turned his M.E. Charity into a CFS charity because you ya self had a CFS illness in Zoster Encephalitis. No way would he want you there. His daughter had a problem with you conflating CFS illnesses with M.E.. M.E. is related to Enteroviral Encephalomyelitis and Enteroviral Meningoencephalomyelitis. These are acute onset brain and spinal cord infections. They have nothing to do with FATIGUE or LACK OF ENERGY, CFS, SEID or ME/CFS or any of that bogus nonsense; which doesnt define a thing. Nothing to do with M.E.. M.E. leads to a severe brain dysfunction and neuromuscular disease involving damaged and lost motor neurons because it is nonparalytic poliomyelitis caused by non-polio enteroviruses. This is certainly not an illness you have had. Not even remotely comparable to what you had. Fatigue isnt even essential to 'M.E.' and is not even mentioned in the 1990 study by Elizabeth Dowsett on M.E.. It causes severe muscle weakness. It is the main symptom. Not fatigue. CFS is the much larger group of patients that you are apart of Shepherd. To even have M.E. that would require a person to have had an 'encephalomyelitis'. Something you have never had. More often than not many who have; are in the 25% group. Basically should be called the M.E. Group.. The enteroviral patients need completely new people representing them. M.E. should not be conflated with CFS illnesses. They need totally separate representatives and separate guidelines. These communities need breaking up and have people who are actually going to represent patients of the same likeness. Enteroviral injured patients need people who are only interested in that and things that can lead too. Needs total removal from CFS. It is no joke and people have died because of this conflation of terms and not proper care as a result. Trying to hide and cover up Enteroviral Brain injuries. Its a fucking utter and complete disgrace. This guideline is going to lead to more harm for genuine M.E. Patients. Wait 4-6 weeks to diagnose any disease, madness. Nothing to do with M.E.. Any patient with an acute brain injury requires hospitalisation. Infectious brain injuries are visible on blood perfusion spect scans on onset. www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ This like it says there is 'chronic fatigue syndrome' Absolutely nothing to do with M.E. CFS is misdiagnosed people based on fatigue. Something M.E. is not at all connected too. They are not related. Ive had a so called ME/CFS type illness myself and M.E.. They are not the same thing but both can cause chronic disability. My onset illness was enteroviral rhombencephalitis its a so called ME/CFS illnesses. Its closer to a more severe version of what you had. M.E. is a thousand times worse and that would be considered severe. Its labeled as such on Encephalitis Society website. M.E. is not even mentioned and the idiot that runs that charity thought M.E. had something to do with CFS. Absolute Disgrace. The amount of misinformation spread about Real M.E. is off the charts. And the people claiming to have M.E. who clearly dont is also off the charts. You faked you had M.E.. Vile twat.
There is no such thing as 'mild M.E.' misdiagnosed CFS patients being mixed up with M.E. Patients. Muscle fatigue can be seen in many different illnesses, even the misdiagnosed CFS ones. Encephalomyelitis means Encephalomyelitis. So much misinformation by CFS patients. They need to shut up about M.E.. Zero point of reference to know anything about it.
most people with a microwave arent chronically ill because some people are less sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia is less radiation allowed by law.
Oxidative stress and inflammation can cause Mitochondria dysfunction. Even though it has been five years since you asked this question i just thought i'd answer it :p
Dokter, can the mithochondrial propl em been seen in the blood as mitochondrial antibodies, liver antibodies and other antibodies or other things. is this the same system with spasmofilie. I know that is a bad cooperation between nerves and muscles . but I am worried about the mito chondrial antibodies. docs here do not take iet seriously. Thanks
***** I tried that option, but it´s very flawed. Being this very important information, it would be good to have a precise translation for the people who doesn´t speak the language used in the video. I speak spanish but i an deal with English well enough
Hello laureano, Science to Patients is a Dutch project funded by the Dutch government. That is why we need to subtitle the video's in Dutch as the spoken language is English. We make the English transcripts available for those who rather read the information. You can send an email to contact@me-cvsvereniging.nl to recieve the transcipts by e-mail. The transcripts of all web seminars are also made available through our website, but we are a bit behind. Please check www.me-cvsvereniging.nl/english-page in a few days.
@@Wetenschap-MEcvsVer Charles Shepherd has been pretending he has M.E.. He never did. He had Zoster Encephalitis and then a PVFS. Just an outright liar. M.E. Patients have had Encephalomyelitis. Something this guy never had.
edereen kan genezen van CVS als ze hun microgolfoven buiten gooien, tenminste als het echte CVS is. Dus niet alleen vermoeidheid, ook: slechte vertering,slecht slapen met nachtmerries, depressie,zere keel, spierpijnen,...na 3 maanden weg
A nice comment on MEA Facebook from my colleague Dr Ellen Goudsmit, who comes from Holland:
I'm sure all those knowledgeable about ME would say the same thing. This is authoritative information. Top notch. I just wanted to inform others that with my scientific background, your analysis made perfect sense. Actually, as a patient who knows a lot of other patients, it made sense. Hope I didn't come across as an opinionated self-important person or anything. I didn't mean to. I just heard someone summarise the state of knowledge without bias and thought I'd pass that on. So many scientists think differently. I'm with you! That's not to reassure, just let others know they can trust this info.
thank you, Dr. Shepard, for making this video.
Isn't it about time you retired Charles? If Melvin Ramsay was still around. Id imagine he would be utterly disgusted that you have turned his M.E. Charity into a CFS charity because you ya self had a CFS illness in Zoster Encephalitis. No way would he want you there. His daughter had a problem with you conflating CFS illnesses with M.E.. M.E. is related to Enteroviral Encephalomyelitis and Enteroviral Meningoencephalomyelitis. These are acute onset brain and spinal cord infections. They have nothing to do with FATIGUE or LACK OF ENERGY, CFS, SEID or ME/CFS or any of that bogus nonsense; which doesnt define a thing. Nothing to do with M.E.. M.E. leads to a severe brain dysfunction and neuromuscular disease involving damaged and lost motor neurons because it is nonparalytic poliomyelitis caused by non-polio enteroviruses. This is certainly not an illness you have had. Not even remotely comparable to what you had. Fatigue isnt even essential to 'M.E.' and is not even mentioned in the 1990 study by Elizabeth Dowsett on M.E.. It causes severe muscle weakness. It is the main symptom. Not fatigue. CFS is the much larger group of patients that you are apart of Shepherd. To even have M.E. that would require a person to have had an 'encephalomyelitis'. Something you have never had. More often than not many who have; are in the 25% group. Basically should be called the M.E. Group.. The enteroviral patients need completely new people representing them. M.E. should not be conflated with CFS illnesses. They need totally separate representatives and separate guidelines. These communities need breaking up and have people who are actually going to represent patients of the same likeness. Enteroviral injured patients need people who are only interested in that and things that can lead too. Needs total removal from CFS. It is no joke and people have died because of this conflation of terms and not proper care as a result. Trying to hide and cover up Enteroviral Brain injuries. Its a fucking utter and complete disgrace.
This guideline is going to lead to more harm for genuine M.E. Patients.
Wait 4-6 weeks to diagnose any disease, madness. Nothing to do with M.E..
Any patient with an acute brain injury requires hospitalisation.
Infectious brain injuries are visible on blood perfusion spect scans on onset.
www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
This like it says there is 'chronic fatigue syndrome'
Absolutely nothing to do with M.E.
CFS is misdiagnosed people based on fatigue. Something M.E. is not at all connected too. They are not related.
Ive had a so called ME/CFS type illness myself and M.E.. They are not the same thing but both can cause chronic disability.
My onset illness was enteroviral rhombencephalitis its a so called ME/CFS illnesses. Its closer to a more severe version of what you had.
M.E. is a thousand times worse and that would be considered severe. Its labeled as such on Encephalitis Society website. M.E. is not even mentioned and the idiot that runs that charity thought M.E. had something to do with CFS. Absolute Disgrace. The amount of misinformation spread about Real M.E. is off the charts. And the people claiming to have M.E. who clearly dont is also off the charts.
You faked you had M.E.. Vile twat.
There is no such thing as 'mild M.E.' misdiagnosed CFS patients being mixed up with M.E. Patients. Muscle fatigue can be seen in many different illnesses, even the misdiagnosed CFS ones. Encephalomyelitis means Encephalomyelitis. So much misinformation by CFS patients. They need to shut up about M.E.. Zero point of reference to know anything about it.
Excellent video!
most people with a microwave arent chronically ill because some people are less sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia is less radiation allowed by law.
What is the cause of the change in the mitochondria in ME patients?
Oxidative stress and inflammation can cause Mitochondria dysfunction. Even though it has been five years since you asked this question i just thought i'd answer it :p
@@sjoerdvermeijden Thanks for answering the question, though I'm quite an expert on the subject by now:-).
Dokter,
can the mithochondrial propl
em been seen in the blood as mitochondrial antibodies, liver antibodies and other antibodies or other things. is this the same system with spasmofilie. I know that is a bad cooperation between nerves and muscles . but I am worried about the mito chondrial antibodies. docs here do not take iet seriously. Thanks
please insert subtitles in english, this is very important information
***** I tried that option, but it´s very flawed. Being this very important information, it would be good to have a precise translation for the people who doesn´t speak the language used in the video. I speak spanish but i an deal with English well enough
Hello laureano, Science to Patients is a Dutch project funded by the Dutch government. That is why we need to subtitle the video's in Dutch as the spoken language is English. We make the English transcripts available for those who rather read the information. You can send an email to contact@me-cvsvereniging.nl to recieve the transcipts by e-mail. The transcripts of all web seminars are also made available through our website, but we are a bit behind. Please check www.me-cvsvereniging.nl/english-page in a few days.
@@Wetenschap-MEcvsVer Charles Shepherd has been pretending he has M.E.. He never did. He had Zoster Encephalitis and then a PVFS. Just an outright liar. M.E. Patients have had Encephalomyelitis. Something this guy never had.
edereen kan genezen van CVS als ze hun microgolfoven buiten gooien, tenminste als het echte CVS is. Dus niet alleen vermoeidheid, ook: slechte vertering,slecht slapen met nachtmerries, depressie,zere keel, spierpijnen,...na 3 maanden weg
Wat moet er buiten worden gegooid? Je bedoelt telefoons, tablets etc?