Dr Jonathan Kerr's approach to treatment

Moved post

I would like more information about Dr Jonathan Kerr's proposals.

Perhaps Hip or others would be able to outline the differences between the interferon which Dr Kerr is proposing with that used by Dr Chia. And is this treatment likely to be viable?

 

Is Dr Kerr proposing interferon?
Is there information on this?

 

If I am not mistaken, Dr Kerr is not a medical doctor but a researcher.

Secondly, Interferon is a particularly nasty treatment that causes profound fatigue and depression. Should someone recommend that kind of treatment, surely would have clinical trials in mind and not a DIY-buy-from-India-infuse at home without the expertise of a knowledgeable doctor and blood work to monitor liver function.

 

For what it’s worth, Dr. Chia does not use interferon.
He tried it in some patients many years ago, but soon abandoned the idea.

 

In the thread about Sophia Mirza's Mum (her passing) there is at the top a short video about Sophia, and towards the end there is an interview with Dr Jonathan Kerr. He is according to the journalist at ST George's university-London. He said that they found many problems in the immune system, and that they are hoping for funding to do a trial using Interferon Beta (used in MS they said). Dr Kerr stated that this drug will modulate the immune system and address viral issues if there are any. He stated that there should be a cure in 3 to 5 years.

 

Dear Milo,
No, not do it yourself at all; Dr Kerr want to start a trial this year. He is looking for funding.

 

My memory is that Dr Kerr was at St George's some years back. He then went to Colombia but has recently taken up a position in the UK again. I have not heard of anything about a trial of beta-interferon. I find it hard to see the justification for that. It is not given for MS because of viruses. Most of us involved directly or indirectly in ME research think that ongoing virus infection is not the problem.

 

Dear Dr Edwards,
In the interview in the other thread, Dr Kerr just added that the Interferon Beta might address viruses if there were any in ME.
His focus seemed on the immune system. He is looking for money to do a trial he said, with the interferon Beta, and he hopes to start this year.

 

I think I watched the talk at Newry. I am not aware of an interview - is that on another thread?

I don't see the justification for using beta-interferon. We don't have any clear evidence of any specific ongoing immune abnormality in ME. Dr Kerr's talk in Newry did not seem to me to be very focused.

 

Yes, because of the death of Criona Merza this video is I guess being shared about her and her daughter but the video is from 2008.

 

Thanks for the date Snowdrop; how discouraging to have an outdated interview. And there is Dr Kerr saying a cure will be forthcoming in 3 to 5 years. And it is now 2019. Anyhow, one has to be so careful with this small videos and the dates.

 

Yes, I find dating things to be a rather underappreciated detail especially on blogs. You go read something and are left with no idea when it was written.

In the case of youtube you have to think to go to the website to view otherwise it's easy to presume it's current.

 

Interferon treatment does seem to work pretty very well for enterovirus-associated ME/CFS, often moving patients up at least two levels on the ME/CFS scale very severe, severe, moderate, mild, remission. There have been three studies to date on interferon treatment, which are detailed in this MEpedia article.

However, unfortunately patients tend to relapse back into ME/CFS typically 4 or 5 months after the course of interferon (although some lasted for over a year before they relapsed). And there are reasons why you cannot use repeated courses of interferon to keep ME/CFS at bay.

One reason being that patients typically develop antibodies against recombinant interferon with long-term treatment, and those antibodies disable the interferon, making this drug ineffective. And of course there is the high cost and the substantial depression it causes in many patients, so it is a hard drug to tolerate.


It would be wonderful if the huge improvements many patients get on interferon would last, but sadly they don't, and patients usually relapse.

It's most likely that the relapse occurs because although interferon greatly reduces viral loads, it is not able to fully eliminate the virus, and there are still pockets of virus left, so the viral infection will eventually grow back.

It's interesting that relapse in these interferon-treated patients would often occur after a bout of heavy exertion, which only underlines the deleterious effects of exercise in ME/CFS — and in enterovirus infection in general (it is has long been known that in enterovirus myocarditis, exercise is pretty detrimental).

John Chia says that he rarely uses interferon now, simply because patients find it very hard to tolerate, and because it is not a long term cure.

But although interferon is not a long-term solution, its efficacy does provide supporting evidence for the role of enteroviral infection in ME/CFS.


Dr Chia found the improvements produced by a course of interferon beta do not last either, and patients return to their illness baseline 6 months after the course of interferon beta. So again it works, but the improvements do not last.



EDIT Mar 2019: Latest news I heard is that Dr Chia now uses interferon beta to treat ME/CFS patients in certain circumstances: he uses interferon beta for severe hospitalized bedbound ME/CFS patients, and finds that after two weeks, these patients are able to get out of bed a take walks around the hospital.

 

The reports detailed ME Pedia article look very unimpressive to me. They are entirely consistent with placebo responses, just like the Lightning Process patients who take up their bed and walk. I think we have to be wary of pseudoscience. Alpha and beta interferon are quite different molecules that happen to have a similar name. We have no good evidence for ongoing viruses being of relevance in ME so the science looks very shaky.

This is the reason why I never got involved in contributing to ME Pedia because it seems to me to have inadequate quality control. The reason why S4ME exists is that a proportion of the members on another site wanted to get away from private practitioners peddling pseudoscience (and some others did not) and have somewhere where critical scientific argument was taken seriously.

 

It would be a funny type of placebo response that only works for ME/CFS patients with enterovirus infections, but not for ME/CFS patients with other types of infection: because in one study it was only ME/CFS patients with high enterovirus titers who responded to interferon.

Admittedly the studies were small in size, so lack statistical power. But that simply calls for a larger study to confirm or refute the conclusions.

We know interferon is not the answer for ME/CFS in terms of a treatment, but it certainly could be a powerful tool to demonstrate that ME/CFS is caused by ongoing enteroviral infection. I don't know why researchers are not taking the opportunity to use this tool.

But they are both strongly antiviral for enterovirus, as this study indicates.

 

Not at all. If either patient or physician knew about the titres that would be a powerful driver of a placebo response. One has to be aware that a 'placebo response' involves complex role playing behaviour from both parties and unless you are sure that everyone is blinded to relevant information in advance you have the same uninterpretable data as in PACE.

 

That is an in vitro study of fibroblasts. Goodness knows whether it means anything in vivo in the context of a putative invisible chronic infection. You can always find bits of evidence that will tack together in a ramshackle way to support a hypothesis. It is necessary to stand back and look at the negatives as well. Te great bulk of evidence suggests that a story based on killing enteroviruses is irrelevant t ME.