From what I can see on the net it does not look as if inosine pranobex has reproducible effects. Others may know more but the rationale for its usage looks a bit simplistic too. I am very keen to learn about all sorts of possibilities but this one doesn't grab me I'm afraid.
Hi Dr Edwards,
My consultant Professor Pinching had clinical experience of using this drug in his ME/CFS clinic at St Bartholomews and in Cornwall over thirty years. He found that it improved half of his ME patients. Because of this he wanted to get funding for a randomised controlled trial for this drug but that was not forthcoming I'm afraid and he was unable to take his interest further.
Unfortunately for us, this good doctor, who actively looked for drugs that gave his ME patients symptomatic relief, and as an immunologist, was interested in his patients' symptoms, and what this might reveal about the underlying pathology of this disease,has now retired.
His care and respect for this patient group cannot be replaced. He worked in this field for over thirty years.
Immunovir shifts the immune system from a TH1 to a TH2 balance and this is an abnormality that is recognised to exist in ME, so a drug that acts on this is likely to have some therapeutic effect.
If this is a rationale you are not impressed with, remember it is only a
theoretical rationale and the actual effect the drug is having may in reality be quite different. But if experience shows that something works, this is the gold standard and tells us something we ought to look at.
Surely if a longstanding
clinical experience shows that a drug is useful, this is worth investigation?
It concerns me that the historic
lack of research interest in ME/CFS has meant that promising research leads are not being followed up and useful clinical experience is being lost.
This is very worrying.
Professor Pinching worked in Britain, in the NHS. I am sure that you could contact him, even though he has now retired. As I said, Dr Fluge told me how helpful he was when they were designing the first Rituximab study and he had already retired then.
On another point, after my initial illness I worked for our local ME support group, and over the next thirty years I noticed that ME seemed to be moving from affecting adults to children, in other words it was moving into a younger age group. Initially children with ME did not seem to exist. My GP also said to me recently that she had noticed that increasingly she was diagnosing girls at puberty.
It worries me that these pointers about this disease are getting lost because the drive to do the research was not there historically and all we are left with now are anecdotal experiences.
Thanks for coming here Dr Edwards and for taking the time to talk to us.
edit.
I am glad to see that cornwall has put up the info sheet about immunovir as I do not have a working scanner.
Cornwall, my experience with immunovir mirrors yours, that it had an effect immediately... this is why the theoretical rationale may not actually be what is going on to cause improvement.
I took this sheet to my GP and she agreed to prescribe immunovir again.
Because of this I have had a year of very good health, and I am angry that, like you, I was refused a drug that could help me by other doctors and had to suffer poor health unnecessarily.
So take this sheet to a GP and they may feel reassured by what they read and able to take on the prescribing responsibility for this on the NHS.
I had to pay for the drug though, and 160 tabs cost about £80
