Event, Newry, N. Ireland: Dr. Jonathan Kerr: ME/CFS Subtypes & Targeted Effective Treatments

DATE AND TIME
Tue 30 October 2018
19:00 – 21:00 GMT

LOCATION
Mourne Country Hotel
52 Belfast Road
Newry
BT34 1TR

https://www.eventbrite.co.uk/e/dr-j...eted-effective-treatments-tickets-51366273908

 

Dr Kerr is a most decent kind man. Years back I just rang him up, desperate mother that I am. He picked up the telephone himself. I guess I hit on the correct extension. When I described the situation he extended so much delicacy and empathy. I will never forget the call.

 

Yes I’m going to ask for his permission to livestream. I had to debate in my head if public live-streaming again was the ‘right’ thing to do by our loyal charity members, as up until now we have been providing this monthly livestream service to our house/bed bound members only.
I now feel it would be unfair not to share publically when certain monthly meeting, expert speakers are covering such vital issues like PACE and now JK presenting new research findings.

I think I often react in an overprotective manner to our members sometimes, as without their support and their monetary donations we wouldn’t exist and couldn’t run the charity..... if that makes any sense!
Fingers crossed he’ll agree now.

 

Code:

https://www.facebook.com/Hope4MEFibro/posts/1954108861314591

 

A bump for this, which is on this evening and was going to be livestreamed.

@JoanNI, is there a link, please?

 

Link will be live here soon:

https://www.youtube.com/watch?v=J-oULhsyyXo

 

I'm getting the same.

 

Sorry. I don’t know any more.

 

I'm getting this rather poorly lit video of little green men pulling plugs out and chuckling to each other.

 

I am getting 'video unavailable' also. Not to worry. Perhaps the recording can be posted later for posterity. I look forward to it.

Thank you @JoanNI and all for organising this.

 

Maybe you're on the Google ghost game I was just playing (on the Google home page today).

 

I couldn't resist

 

I listened to the video. I am afraid I am very disappointed. Dr Kerr's description of the background immunology is vague, muddled and in places wrong. The claim that there is new evidence for EBV involvement does not fit with what I have seen of studies over the last 5 years. The emphasis on psychological stress seems ungrounded and unhelpful. I think this is weak science that is a distraction from the need to get some high quality research going.

I think it is particularly unfortunate that he ends up effectively recommending anti-viral drugs, which trials so far indicate do not work. The last thing we need is for parents to be searching out private practitioners who are prepared to treat children and adolescents with drugs like this without proper evidence of effectiveness and safety. I think we all have an obligation to ensure we do not encourage irresponsible practice.

 

You suggest that using anti-viral drugs to treat viral reactivation is irresponsible.

Non ME children are treated routinely with anti-virals such as acyclovir, for varicella zoster virus, herpes simplex virus etc.

Your statement does not reflect the widespread use of these drugs with children outside the area of ME, the lack of any concerns as a result of such use or the positive anti-viral experiences of people focused on ME such as Professor Montoya or others such as Lerner.

Either way, please would you explain how you would suggest treating reactivated herpes viruses if not with the recommend drugs designed to treat herpes viruses or if you saying that viral reactivation should not be treated at all, why not?

Thanks