Discussion in 'General ME/CFS News' started by AndyPR, Aug 8, 2017.
I remember when Dr Hyams had a private clinic in the UK around 2000. He was interested in offering Ampligen. He ended up moving to North America. What I heard* (not from him) was that it was said he might get in trouble with the General Medical Council in the UK which scared him off.
*There is a chance the information about the General Medical Council is incorrect
Ampligen is an immunomodulator that targets a portion of the immune system that fights viruses....
Ampligen’s use in ME/CFS is predicated on the idea that viruses and/or immune issues are playing havoc in the disease. Ampligen is a toll -like receptor three (TLR-3) inducer. The receptor it binds to are found on antigen presenting cells such as dendritic cells that have been exposed to pathogens.
The binding of the receptor activates hundreds of genes in a cell. The side effects from most TLR inducing drugs limits their effectiveness, but Ampligen is unique among these drugs in that it does not cause cells to produce large amounts of pro-inflammatory cytokines.
We're excited by this prospect - no doubt it will be a tough row to hoe as Canada is known for its labyrinth approval process - but we have the highest ME rates in the world at 1.9%, so the need is great.
There is extra reason to fast track Ampligen by our Health Minister, as recent data indicates Ampligen has 50% efficacy for folks who have been sick with ME less then 8 years.
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The problem with Ampligen is that it is very expensive and that there needs doctors to safely infuse the drug within the health care system.
Here in Canada we have a socialized health care system. Optimally the drugs should be all covered and whenever the drugs require an infusion and a fair amount of nursing time, this needs to be covered for free.
If Ampligen gets approved as the only drug approved for Me in Canada, it creates the uncomfortable situation that it would cost a lot of money to our governments to indefinitely infuse this drug to patients who get better on it, or make patients pay for it which implies that our disease is actually not covered in Canada.
On a second topic, the enterovirus theory has not been proven and in fact when the CDC tried to replicate Dr Chia's work, they were unable to find what Chia found. Regardless, there is no treatment for enterovirus at the moment, so it's rather pointless to get stucked on one theory. I would rather have a researcher who is no fixed on one theory but remains open to going to the bottom of things and further the field through rigorous research using the most appropriate technology to achieve that.
At this point I would rather put my money on Davis team and Davis approach.
I would also insist that clinical trials and access to drugs and treatments (including but not limited to Ampligen) remain accessible to all Canadians regardless of their location, their ability to pay or duration of illness.
If the drug works and people return to work, they are then contributing to society through income tax etc so the real cost is alot less??
I think after the initial infusions and no adverse reactions occur, id think there should be technology now where people could do their own subcut infusions from home. Plus i wonder if low doses of frequency or some type of cycling of treatment eg 6 weeks and 6 weeks off could be considered after the initial 6 to 12 months of treatment and improvement have occurred.
It would be interesting to know the opinions of drs like dr peterson and kdm who have used it, what they think is the best way to maintain improvement/recovery with ampligen or do they think its best to stay on the same initial drug doses.
Its also possible if someone is a responder to antivirals, that if ampligen helps significantly, could antivirals or even immunovir, who shares some similar effects to ampligen, help one maintain improvements from initial ampligen treatment.
Im not 100% on this but i recall yrs back ampligen were looking into an oral version of the drug. Im not sure where that is at or probably research halted until infusions were approved??
Further insight into the Ampligen situation from dr Enlander on another thread:
I can't find it again but someone mentioned 50% of patients improve on Ampligen. If you talk to the patients on Ampligen, they will tell you that the numbers are very optimistic and that only few are lucky enough to be recovered enough to return to work. I would not say no to a chance in improving and recovering a quality of life, however one needs to be realistic into their expectations in what the drug can do for them and how much it would cost them. As for every treatments out there, there will be responders, partial responders and non responders. Then there is the problem that FDA still has not approved it for ME.
Meanwhile, we are waiting for Cyclophosphamide and Rituximab climical trial results amd hopefully announcements of pilot study for 'cell danger response' treatment. It's good to keep the bigger picture in mind.
Hemispherx Biopharma Announces Identification of High Responder Patient Subgroup from Ampligen® Phase III Trial in Patients with CFS/ME
The theory why the 'less than 2 years' subset 'failed to show a clinically-significant response' is because some folks spontaneously recover without treatment, enough in the placebo group to affect the data.
(I wonder if some of these 'spontaneous' recoverers are actually a relapse-remitting subgroup as I had 2 complete remissions.)
While in the 'greater than 8 years' subset response drops off after 8 years, there are still some strong responders, but evidently not enough to be 'clinically significant'.
hi all. I heard today that hemispherx is about to go bankrupt and that petersons ampligen IV clinic has been suspended pending some kind of review; apparently a neurologist in charge of the trials there screwed up somehow in her reporting or something...?
anyone else hear this?
This is true.
To the best of my knowledge Hemispherx is not in imminent danger of bankruptcy.
Hemispherx Expands Ampligen Early Access Programme to Canada to Treat ME/CFS Patients
Early Access Programs are Known as "Special Access Programmes" in Canada
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