I am a medical doctor who is taking RCH4.
For myself, the decision to start on it was not a complete jump in the dark as I had a patient with MND who stabilised. That is how I found the RCH4 charity.
For anyone interested, since starting on it somewhat less than 3 years ago my decline stopped. Fortunately I am (thus far) stabilised. To be exact, I actually improved 5 FRS points over a 9 month period but then slipped back 3 points. For past 6 months I am better than when I started by two points. In other words, overall, I have not only stabilised, but improved while on this medication.
I see postings asking how can one take something unknown from unknown people. A reasonable comment. I would say that I was aware of the inevitable outcome if I did nothing.
The RCH4 people proved to be highly knowledgeable in their area of ALS research expertise and are unwaveringly supportive.
The cost to me? Nothing at all.
Scam?
I cannot understand the hostile mentality of forum subscribers or the negative comments by moderators who should be neutral. If moderators wish to express their own opinion, they should not moderate.
Forum subscribers and other malicious people like Mr. Eric Valor have caused me to lose the source of my RCH4. People started running around calling out "SCAM" and propagating lies - without one shred of evidence and without even bothering to investigate.
Earlier this year I posted on another thread here about RCH4 on this subject but that thread is now closed.
Just one example (above) from this active thread follows below.
Posts by `Affected`
The people making this RCH4 DO ASK FOR MONEY and obviously in a very big way.
Where do they ask for money? I have looked this up.
Now tell me where they ask for money and precisely where is it obvious.
You also stated
I will say that a group of people that are getting a lot of money invested in their cause
Why do you and others propagate complete untruths?
Now tell everyone exactly where you found the word `Investment`
Publish the evidence or apologise.
You also stated
THEY ARE NOT FUNDING THE COST THEMSELVES
I am getting more angry by the minute. I suspect I am not the only one.
Instead of hitting out at a compassionate group of people who have paid their own money to treat me free for all this time, why not ask Dr. Bedlack to answer why he knowingly stood by and watched the only effective drug being destroyed by his silence.
Someone said that this is going to be the biggest scandal in ALS research history. Correct.
Someone else said Dr. Bedlack is a disgrace. They are absolutely right.
I now know that he has been given proof that RCH4 is no scam and has confirmed in writing to at least one person that he has been given the proofs, but has refused to publish the fact that he knows.
Apparently he was not asked to support the drug, only to state that he has proof that the RCH4 people were not a scam. That is reasonable.
As a medical practitioner he has a duty to be honourable. He certainly is not.
To the kind Dr. Bedlack who has helped thousands (quoting somebody) who vigorously promotes himself and has a big following, some questions must be asked.
Question - Does he pay his own private money to treat his patients?
Question - Has he ever produced a drug of any sort in his 16 years of practice?
Question - What percentage of his patients has he stabilised for months or years?
Question - Why has he said nothing while a charity successfully treating PALS collapsed?
I am now conferring with my lawyers as to what can be done about Bedlack & Valor. As I see it, my life is at stake due to their (criminal?) conduct.
As a doctor, I am now going to make a formal complaint to Dr. Bedlack`s licencing board. If he gets struck off he well deserves it. Dr. JNB
For myself, the decision to start on it was not a complete jump in the dark as I had a patient with MND who stabilised. That is how I found the RCH4 charity.
For anyone interested, since starting on it somewhat less than 3 years ago my decline stopped. Fortunately I am (thus far) stabilised. To be exact, I actually improved 5 FRS points over a 9 month period but then slipped back 3 points. For past 6 months I am better than when I started by two points. In other words, overall, I have not only stabilised, but improved while on this medication.
I see postings asking how can one take something unknown from unknown people. A reasonable comment. I would say that I was aware of the inevitable outcome if I did nothing.
The RCH4 people proved to be highly knowledgeable in their area of ALS research expertise and are unwaveringly supportive.
The cost to me? Nothing at all.
Scam?
I cannot understand the hostile mentality of forum subscribers or the negative comments by moderators who should be neutral. If moderators wish to express their own opinion, they should not moderate.
Forum subscribers and other malicious people like Mr. Eric Valor have caused me to lose the source of my RCH4. People started running around calling out "SCAM" and propagating lies - without one shred of evidence and without even bothering to investigate.
Earlier this year I posted on another thread here about RCH4 on this subject but that thread is now closed.
Just one example (above) from this active thread follows below.
Posts by `Affected`
The people making this RCH4 DO ASK FOR MONEY and obviously in a very big way.
Where do they ask for money? I have looked this up.
Now tell me where they ask for money and precisely where is it obvious.
You also stated
I will say that a group of people that are getting a lot of money invested in their cause
Why do you and others propagate complete untruths?
Now tell everyone exactly where you found the word `Investment`
Publish the evidence or apologise.
You also stated
THEY ARE NOT FUNDING THE COST THEMSELVES
I am getting more angry by the minute. I suspect I am not the only one.
Instead of hitting out at a compassionate group of people who have paid their own money to treat me free for all this time, why not ask Dr. Bedlack to answer why he knowingly stood by and watched the only effective drug being destroyed by his silence.
Someone said that this is going to be the biggest scandal in ALS research history. Correct.
Someone else said Dr. Bedlack is a disgrace. They are absolutely right.
I now know that he has been given proof that RCH4 is no scam and has confirmed in writing to at least one person that he has been given the proofs, but has refused to publish the fact that he knows.
Apparently he was not asked to support the drug, only to state that he has proof that the RCH4 people were not a scam. That is reasonable.
As a medical practitioner he has a duty to be honourable. He certainly is not.
To the kind Dr. Bedlack who has helped thousands (quoting somebody) who vigorously promotes himself and has a big following, some questions must be asked.
Question - Does he pay his own private money to treat his patients?
Question - Has he ever produced a drug of any sort in his 16 years of practice?
Question - What percentage of his patients has he stabilised for months or years?
Question - Why has he said nothing while a charity successfully treating PALS collapsed?
I am now conferring with my lawyers as to what can be done about Bedlack & Valor. As I see it, my life is at stake due to their (criminal?) conduct.
As a doctor, I am now going to make a formal complaint to Dr. Bedlack`s licencing board. If he gets struck off he well deserves it. Dr. JNB