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Dr Naviaux's Suramin & Autism Trial - publication and interview

Demepivo

Demepivo

Dolores Abernathy
Messages
411
From the Nofone article. He took out $500 000 of debt in his name to fund the study.

The trial cost $1.2 million over two years. This might sound like large number, but is relatively inexpensive for a trial as complex as this one was. We were able to keep the expenses low because more than 30 of the professionals who worked on the trial either volunteered their time or worked at a greatly reduced rate.

Still, I was only able to raise $700k so we were $500k short but we did the study anyway and had to go into debt to complete it. Funding came from a handful of non-profits [including N of One: Autism Research Foundation] and very dedicated parents and families that believed in our work. Unfortunately none of the usual major funding agencies supported our research. As a result of going into debt to fund the study, I've had to dramatically shrink my lab and slow our research progress greatly. We are currently working at only about 20% of our capacity if we actually had adequate funding.
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S

Sidereal

Senior Member
Messages
4,856
There is a very large industry of mental health and education professionals who stand to lose everything if the current paradigm (autism is an incurable neurodevelopmental disorder) were overthrown and replaced by the metabolic hypothesis. I'm not surprised to hear that he has had to go into $500k debt and that no conventional funding source such as the NIH wanted to touch this work. I expect him to receive a lot of pushback for this sort of work, along the lines of the slanderous attacks he's been getting for his CFS work. Given that his hypothesis makes sense and that he has already demonstrated reversibility of ASD symptoms in several animal models of ASD, it would make perfect sense for the government to fund this sort of work. If this were cancer, everyone would be jumping on it in a hot minute, but since it's something "behavioural" like autism or CFS, the invisible forces of the medical establishment work to stifle progress.
 
A.B.

A.B.

Senior Member
Messages
3,780
Sidereal said:
since it's something "behavioural" like autism or CFS, the invisible forces of the medical establishment work to stifle progress.
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Patients need to get organized and pressure politicians to fund this research, as well as financing research via donations.

Medical research needs to be about the patient, not about the profits and careers of others.
 
BruceInOz

BruceInOz

Senior Member
Messages
172
Location
Tasmania
In the interview linked to in the original post, Naviaux said:
You can think of this as a kind of cellular PTSD. If this happens during early child development, we believe it causes autism and many other chronic childhood disorders. When it happens later in life, a persistent CDR can lead to many other disorders. Other disorders we are studying that we also believe are related to the CDR are chronic fatigue syndrome (CFS), Gulf War Illness, and certain autoimmune disorders.
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I would have thought this suggests there should be a higher incidence of me/cfs in people with autism than the general population. Are there any studies that suggest this?
 
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natasa778

Senior Member
Messages
1,774
BruceInOz said:
I would have thought this suggests there should be a higher incidence of me/cfs in people with autism than the general population. Are there any studies that suggest this?
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How would you go on about diagnosing ME in someone who is non-verbal/does not communicate?

How would you express/explain your own symptoms if you had no words and couldn't write etc? What would your behaviour be like? And especially if you developed those symptoms and feelings when you were too young to know of any other, ie 'normal' state of being? Hypothetical question but I am genuinely interested :)
 
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natasa778

Senior Member
Messages
1,774
BruceInOz said:
Autism covers a large spectrum. Not all are non verbal.
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That is correct, although judging from what is known on many other health conditions, their incidence as well as severity correlates with severity of autism. So in theory one could expect to find more severe symptoms of CFS in more severely affected individuals, who in turn would only be able to express symptoms as behaviours...
 
BruceInOz

BruceInOz

Senior Member
Messages
172
Location
Tasmania
natasa778 said:
How would you express/explain your own symptoms if you had no words and couldn't write etc? What would your behaviour be like? And especially if you developed those symptoms and feelings when you were too young to know of any other, ie 'normal' state of being? Hypothetical question but I am genuinely interested :)
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In the n=1 sample of my son, the gradual onset of POTS is clear in hindsight (although it was not so clear at the time).
 
BruceInOz

BruceInOz

Senior Member
Messages
172
Location
Tasmania
natasa778 said:
That is correct, although judging from what is known on many other health conditions, their incidence as well as severity correlates with severity of autism. So in theory one could expect to find more severe symptoms of CFS in more severely affected individuals, who in turn would only be able to express symptoms as behaviours...
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A study of the incidence of me/cfs in a group with high functioning autism would be an interesting check of Naviaux's theory though.
 
A.B.

A.B.

Senior Member
Messages
3,780
One problem with the study is that the drug caused a rash in all recipients that compromised the blinding for parents.

Another potential limitation of the trial was the self-limited rash. The rash was asymptomatic and resolved spontaneously in a few days. In theory, the rash may have biased parents in a way that caused them to either improve their scores on the ABC, ATEC, RBQ, and CGI, or to report more side-effects or adverse behaviors at both the 7-day and 6-week reports. Examiner-based ADOS scoring was more resistant to this potential bias, since the rash was not visible on exposed skin to the outcome examiners at any time. However, a design limitation of the study was that one of the two ADOS examiners was also assigned to conduct scripted phone interviews with the families, and might have been susceptible to unconscious bias even though the study remained blinded and the rash preceded any significant examiner-based outcomes by one and a half months.
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natasa778

Senior Member
Messages
1,774
Parents talk about how their children improved with Suramin.

subject #1

Mom of a non-verbal 14 year old - " On a Saturday about a week after the infusion, his dad was making a snack in the kitchen. My son went in and said very clearly the first sentence of his life. He looked at his dad and said, “I want to eat chips.”
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subject #2

... Immediately after the infusion, a kind of inner cheerfulness started to come out. When we were walking back to the car, he was holding my hand. He started giggling and looked up at me and said, “I just don’t know why I’m so happy.” ...
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subject #3

After the infusion, we witnessed a remarkable change. Within an hour after the infusion he started to make more eye contact with the doctor and nurses in the room. There was a new calmness at times, but also more emotion at other times. He started to show an interest in playing hide-and-go-seek with his 16-year-old brother. He started practicing making new sounds around the house. He started seeking out his dad more...

After suramin he had an explosion of new interests. He started asking to try new foods. He started using the family laptop computer. He learned how to surf the internet. He discovered YouTube.
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subject #4

Before suramin, he could only make a few sounds and a few poorly enunciated, whispered words. He had never spoken a complete sentence.

On the day of the suramin treatment, he was very anxious and upset. He strongly resisted the IV placement and didn’t make eye contact with any of the doctors or nurses in the room.

Within an hour after the infusion he seemed calmer. He made eye contact with the doctor. At home, he started making new sounds in the first week, almost as if he was practicing. He started seeking out new social interactions both with adults and other children. He actually hugged another child of a family friend during a visit in the first week. This was the first time he had ever done this, and it just blew us away.

In the second week after suramin, he said the first sentence of his life...
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subject #5

After the infusion, the nasal quality in his voice disappeared. His anxiety seemed to disappear too. He became calmer, almost cheerful. On the way out from the infusion center, he waved to all the staff and said loudly and clearly to all the nurses, “See you later!”...
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Lots more detail here http://www.sandiegouniontribune.com/business/biotech/sd-me-autism-parents-20170525-story.html

At least two report 'disappearance of nasal quality' in child's voice.
 
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