Antivirals in the UK

[NelliePledge]

Hi Im pretty new to this forum there is such a vast amount of information so apologies if this is covered elsewhere. I had chickenpox as an adult so I would like to find out if antivirals could help reduce my ME symptoms. I can see that people elsewhere in the world do seem to be getting tests and prescribed antivirals. i feel like it really isnt worth even mentioning this to my GP as they wouldnt be allowed to test/prescribe - Ive read what MEA purple book says about antivirals not having NICE approval for ME. This has sent me down the herbal route and I'm trying out olive leaf extract at the moment just based on reading up about it (yes I am aware it can reduce your BP -my BP is high so not an issue for me). It seems illogical that you can be prescribed antivirals in Australia, Canada etc and not in the UK. If these existing drugs help some people it must be within the realms of possibility for the UK to set a framework for the circumstances in which they could be prescribed for ME here. How much money could they be saving by doing that..............
I spotted in the MEA purble book that MEA have been exploring trying to get a trial over here. Amongst all the great work that is going on at the moment it would be good if this could happen - is there any chance that might go ahead?

 

[charles shepherd]

Below is the section (7.4.6) on antiviral drug treatment from the MEA purple book - for the benefit of people who do not have a copy

There is also a section on immunomodulatory treatments (including immunoglobulin) if anyone needs an up to date summary of clinical trial information relating to immune system treatments here in the UK - which are again NOT recommended by the NICE guideline on ME/CFS

As you say, the NICE guideline on ME/CFS does NOT recommend the use of antiviral treatments - so this is not a form of treatment that is likely to be prescribed on the NHS, unless there are very good reasons for doing so

As you also note, the MEA has met with Roche pharmaceuticals, who produce valganciclovir, to see if they could be persuaded to encourage and/or help fund a clinical trial here in the UK. But this initiative was not successful.

7.4.6 Antiviral drugs

Although viral infections commonly trigger ME/CFS, there is very little scientific evidence to indicate that a persisting viral infection is involved in perpetuating ME/CFS. The first antiviral drug to be assessed in a clinical trial was acyclovir (Straus et al 1988a). No benefits were found. Intravenous ganciclovir was found to be of benefit in a subset of patients with abnormal aberrant T-waves in a small pilot trial (Lerner et al 1997).

Valganciclovir (VGCV), which is active against human herpes virus type-6 infection, is currently being assessed in the USA following a report that it could be of benefit in ME/CFS patients with evidence of persisting EBV infection (Kogelnik et al 2006).

A more recent study investigated whether antibody titres against HHV-6 and EBV were associated with a clinical response to valganciclovir in a subset of ME/CFS patients (Watt et al 2012). Antibody titres were considered high if HHV-6 IgG was > 1:320, EBV capsid antigen IgG was > 1:640 and EBV early antigen IgG was > 1:160. Treatment with valganciclovir, independent of baseline antibody titres, was associated with self-rated improvement in physical and cognitive functioning in those who had positive HHV-6 and/or EBV serologies.

Montoya et al (2013) randomised (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir or placebo for six months in a double-blind, placebo-controlled trial. Statistically significant differences between groups were observed in mental fatigue sub-scores and cognitive function. The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining nine months. In the VGCV arm, monocyte counts decreased, neutrophil counts increased and cytokines were more likely to evolve towards a Th-1 profile.

NICE does not recommend the use of antiviral treatment in ME/CFS (National Institute for Health and Care Excellence 2007b), and this has had a very negative impact on any interest here in the UK regarding a clinical trial that would aim to replicate these very interesting findings. The MEA has met with a representative from the pharmaceutical company that manufactures Valcyte (one of the brand names of VGCV) to discuss the possibility of a UK clinical trial.

Dr Charles Shepherd

Hon Medical Adviser, MEA

 

[TigerLilea]

It seems illogical that you can be prescribed antivirals in Australia, Canada etc and not in the UK.

I'm in Canada and my doctor wouldn't prescribe antivirals unless there was a sound medical reason to do so. You have to remember that in the US they have "for profit" medicine, so they seem to be able to do a lot more than most countries would allow.

 

[Knockknock]

Are you serious????
You can not have Antivirals prescribe in the UK???
For ME???
This most be a joke right?

 

[Knockknock]

Below is the section (7.4.6) on antiviral drug treatment from the MEA purple book - for the benefit of people who do not have a copy

There is also a section on immunomodulatory treatments (including immunoglobulin) if anyone needs an up to date summary of clinical trial information relating to immune system treatments here in the UK - which are again NOT recommended by the NICE guideline on ME/CFS

As you say, the NICE guideline on ME/CFS does NOT recommend the use of antiviral treatments - so this is not a form of treatment that is likely to be prescribed on the NHS, unless there are very good reasons for doing so

As you also note, the MEA has met with Roche pharmaceuticals, who produce valganciclovir, to see if they could be persuaded to encourage and/or help fund a clinical trial here in the UK. But this initiative was not successful.

7.4.6 Antiviral drugs

Although viral infections commonly trigger ME/CFS, there is very little scientific evidence to indicate that a persisting viral infection is involved in perpetuating ME/CFS. The first antiviral drug to be assessed in a clinical trial was acyclovir (Straus et al 1988a). No benefits were found. Intravenous ganciclovir was found to be of benefit in a subset of patients with abnormal aberrant T-waves in a small pilot trial (Lerner et al 1997).

Valganciclovir (VGCV), which is active against human herpes virus type-6 infection, is currently being assessed in the USA following a report that it could be of benefit in ME/CFS patients with evidence of persisting EBV infection (Kogelnik et al 2006).

A more recent study investigated whether antibody titres against HHV-6 and EBV were associated with a clinical response to valganciclovir in a subset of ME/CFS patients (Watt et al 2012). Antibody titres were considered high if HHV-6 IgG was > 1:320, EBV capsid antigen IgG was > 1:640 and EBV early antigen IgG was > 1:160. Treatment with valganciclovir, independent of baseline antibody titres, was associated with self-rated improvement in physical and cognitive functioning in those who had positive HHV-6 and/or EBV serologies.

Montoya et al (2013) randomised (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir or placebo for six months in a double-blind, placebo-controlled trial. Statistically significant differences between groups were observed in mental fatigue sub-scores and cognitive function. The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining nine months. In the VGCV arm, monocyte counts decreased, neutrophil counts increased and cytokines were more likely to evolve towards a Th-1 profile.

NICE does not recommend the use of antiviral treatment in ME/CFS (National Institute for Health and Care Excellence 2007b), and this has had a very negative impact on any interest here in the UK regarding a clinical trial that would aim to replicate these very interesting findings. The MEA has met with a representative from the pharmaceutical company that manufactures Valcyte (one of the brand names of VGCV) to discuss the possibility of a UK clinical trial.

Dr Charles Shepherd

Hon Medical Adviser, MEA

They dont use antivirals in Uk, they treat it with phsycal and behavioral theraphy!! This is absurd.

 

[JES]

Are you serious????
You can not have Antivirals prescribe in the UK???
For ME???
This most be a joke right?

Doctors normally don't prescribe treatments unless they have proven efficiency for disease in question. Even Montoya and most other CFS doctors are now moving away from the idea to treat CFS/ME with antivirals. Results haven't been good enough.

 

[Knockknock]

Doctors normally don't prescribe treatments unless they have proven efficiency for disease in question. Even Montoya and most other CFS doctors are now moving away from the idea to treat CFS/ME with antivirals. Results haven't been good enough.

Hmmm waooo interesting!!
I was under the totaly wrong idea, my Doctor is a well know doctor and researcher like montoya, she is strong believer that active viruses has to do with the illness and antivirals valtrex etc are very helpfull.
Beside moat of forum post from patients comments,online comments from evry were around the world people always say to have huge improvements on antivirals.
Please if you have Any link of a paper or publication that proof that please share it with me, so i can share it with my other family and friends, they all have have done really good on valtrex.
At least that is what we all believe, we may be wrong.
Thanks

 

[Knockknock]

Doctors normally don't prescribe treatments unless they have proven efficiency for disease in question. Even Montoya and most other CFS doctors are now moving away from the idea to treat CFS/ME with antivirals. Results haven't been good enough.

Myself had he EBV EBNA igm active even though in normal test will show like past infections in the EBV EBNA show that it was shading, after 8 months on valtrex my symptoms improved alot, the EBV EBNA IGG IGM test recently comeback negative, Im not the person that I was before, neither is close family member also on valtrex, but both have mayor improvements, at one point a year a go we were overwelmed with syptoms, POTS was horrible, blood preasure flutuaction and heart rate was horrible, pain, heat pain, neuropahatic pain, body temperature chamges, night sweats, vision issues, dizzines, brain fogs, mayor concentration and short memory issues, disrupted sleep, stomach issues, energy in genral was probably a 5-6 on the scale.
I was never the severly ill person like totally house bed bound but the overwwlming of symtomes was horrible.
Now 8 month after valtrex and ofcourse Cq10 and couple other supplements im most likley around 8 on the scale, nerophatic pain when away, stomach is much better no abdominal pain, no chest pain, no dizzines, no POTS very mild some times, muscle pain improved 80-90%, , no vision issues, sleep improved 80-90%, i dont used sleeping aid anymore, still have mild concentration issues sometime but never like before, brain frog almost none, very vert little, no changing in body temperatute or nigh sweats anymore.
That is my experiance with antivirals.

 

[Jonathan Edwards]

Hi Im pretty new to this forum there is such a vast amount of information so apologies if this is covered elsewhere. I had chickenpox as an adult so I would like to find out if antivirals could help reduce my ME symptoms. I can see that people elsewhere in the world do seem to be getting tests and prescribed antivirals. i feel like it really isnt worth even mentioning this to my GP as they wouldnt be allowed to test/prescribe - Ive read what MEA purple book says about antivirals not having NICE approval for ME. This has sent me down the herbal route and I'm trying out olive leaf extract at the moment just based on reading up about it (yes I am aware it can reduce your BP -my BP is high so not an issue for me). It seems illogical that you can be prescribed antivirals in Australia, Canada etc and not in the UK. If these existing drugs help some people it must be within the realms of possibility for the UK to set a framework for the circumstances in which they could be prescribed for ME here. How much money could they be saving by doing that..............
I spotted in the MEA purble book that MEA have been exploring trying to get a trial over here. Amongst all the great work that is going on at the moment it would be good if this could happen - is there any chance that might go ahead?

Dear NelliePledge,

There is no reliable evidence that antivirals are of any use in ME. We have no evidence for persistent viral infection in ME and I would be prepared to bet that if further trials are done they will come out negative. Nobody would save any money by allowing the use of antivirals - it would be money down the drain. I doubt you could get antivirals on public healthcare in Canada or Australia. Private practitioners will prescribe them and insurance schemes may be persuaded to reimburse almost anywhere. Even in the UK some NHS consultants will bend the rules at times but as time goes by I think they are realising it is a waste of time.

We all have chicken pox virus latent within us after our first infection but that has nothing to do with ME a far as we know.

There are huge problems with the NHS - but they are financial limits the apply to all areas. We also have problems with poor science on the CBT front but that is another issue. I have some sympathy for GPs if they get fed up with patients asking for drugs that don't work!!

 

[erin]

We all have chicken pox virus latent within us after our first infection but that has nothing to do with ME a far as we know.

I'm surprised that you are so sure about this.

I'm so sick since I had chicken pox as an adult. I feel I've never recovered from it except the blisters. Maybe it's just a coincidence?

 

[Knockknock]

Dear NelliePledge,

There is no reliable evidence that antivirals are of any use in ME. We have no evidence for persistent viral infection in ME and I would be prepared to bet that if further trials are done they will come out negative. Nobody would save any money by allowing the use of antivirals - it would be money down the drain. I doubt you could get antivirals on public healthcare in Canada or Australia. Private practitioners will prescribe them and insurance schemes may be persuaded to reimburse almost anywhere. Even in the UK some NHS consultants will bend the rules at times but as time goes by I think they are realising it is a waste of time.

We all have chicken pox virus latent within us after our first infection but that has nothing to do with ME a far as we know.

There are huge problems with the NHS - but they are financial limits the apply to all areas. We also have problems with poor science on the CBT front but that is another issue. I have some sympathy for GPs if they get fed up with patients asking for drugs that don't work!!

Yes i dont understand how they speak so sure about this, its the first time that some speak so strongly against Antivirals for Me.

There is evidence that even when coventiinal comercial blood test show past infections for this herpes viruses they mat still be active and shading.
Im a great example of that Dr Edwards, my comercial test for EBV show past infection, two doctors, a very smart doctor in new york and well know doctor at nova university both agree EBV could be active and shading in cfs in a diferent way than normal idividuals, since this test are comercially designed for people with normal immune systems, the immune system is not normal, is disfuntional and deficiency in most cases.
They were 100% right after sending my blood to an infectious disease lab in New jersey "boom EBV EBNA was positive in IgG IgM" most labs on the EBNA only do IgG..
Not only Montoya, Klimas, Vera, Pridgen, many Well know Doctors believe in the antivirals.
I really dont know in what do all you guys saying this base your argument.
I havent read about this anywere.
Beside the fact that many people have respond and improve on antiviral is strong evidence of antiviral meds do work.
We have both, patients on antivirals that who knows if they also have any effect on lowering retroviral viral load, there is also many people on retrovirals using viread and insetress or travuda that hace improved alot almost to remition, either for he retrviral effect or the anti viral anti herpes effect, this part is unclear but curcunstacial evidence suggest that antivirals have a potencial good effect on ME/CFS.
You guys can argue this as much as you can but there is no evidence either way, but the fact that many people have mayor improvements on it point to that direction.
Maybe most severly illl dont respond thesane, maybe the viruses or retrovirus or whatever the pathogen may be it has far done far more madage and harder to reverse.

I did great in valtrex!
My Me is 80% better, symtomes are 80-90% better.
Me EBV EBNA that originaly show negative in comercial test and later positive a week later with positive EBNA IGG IGM, after 8 month on valtrex show negative in both and symtomes improved 80-90%???
How so you explain that?
I may be the exeption??
I dont think so.

 

[NelliePledge]

Dear NelliePledge,

There is no reliable evidence that antivirals are of any use in ME. We have no evidence for persistent viral infection in ME and I would be prepared to bet that if further trials are done they will come out negative. Nobody would save any money by allowing the use of antivirals - it would be money down the drain. I doubt you could get antivirals on public healthcare in Canada or Australia. Private practitioners will prescribe them and insurance schemes may be persuaded to reimburse almost anywhere. Even in the UK some NHS consultants will bend the rules at times but as time goes by I think they are realising it is a waste of time.

We all have chicken pox virus latent within us after our first infection but that has nothing to do with ME a far as we know.

There are huge problems with the NHS - but they are financial limits the apply to all areas. We also have problems with poor science on the CBT front but that is another issue. I have some sympathy for GPs if they get fed up with patients asking for drugs that don't work!!

As I said I havent raised this with my GP because I know she's not able to pursue this avenue. It seems odd if antivirals are such a no hope option that MEA would be talking about possibly getting a trial in the UK.

 

[Tammy]

@NelliePledge . there are other anti-virals if you decide to add on more. These are the ones that are helping me. Cats Claw (this is strong!) Licorice root, L-lysine, Vit. C, Zinc, lemon balm.

 

[Knockknock]

@NelliePledge . there are other anti-virals if you decide to add on more. These are the ones that are helping me. Cats Claw (this is strong!) Licorice root, L-lysine, Vit. C, Zinc, lemon balm.

Absolutly.
I have notice lot of improvements after starting on lysine.

 

[Jonathan Edwards]

I'm surprised that you are so sure about this.

I'm so sick since I had chicken pox as an adult. I feel I've never recovered from it except the blisters. Maybe it's just a coincidence?

It certainly seems that infections may precipitate ME but that is quite different from ME being due to continued presence of the virus - which all normal people have as well. Persistent fatigue after EBV is very well documented but I don't think there is any evidence for the prolonged fatigue being directly due to presence of virus. Everyone continues to have virus after EBV, including those like me who had fatigue for a while and then came out of it.

 

[Jonathan Edwards]

As I said I havent raised this with my GP because I know she's not able to pursue this avenue. It seems odd if antivirals are such a no hope option that MEA would be talking about possibly getting a trial in the UK.

There is nothing odd about setting up trials. It is quite consistent with what I said - I think Charles Shepherd would agree. We are desperate for treatments for ME so there is no harm in doing proper trials of antivirals just to make sure we are not missing something.

 

[NelliePledge]

There is nothing odd about setting up trials. It is quite consistent with what I said - I think Charles Shepherd would agree. We are desperate for treatments for ME so there is no harm in doing proper trials of antivirals just to make sure we are not missing something.

I dont think setting up trials is odd. I think not setting up trials is odd.

 

[JES]

Myself had he EBV EBNA igm active even though in normal test will show like past infections in the EBV EBNA show that it was shading, after 8 months on valtrex my symptoms improved alot, the EBV EBNA IGG IGM test recently comeback negative, Im not the person that I was before, neither is close family member also on valtrex, but both have mayor improvements, at one point a year a go we were overwelmed with syptoms, POTS was horrible, blood preasure flutuaction and heart rate was horrible, pain, heat pain, neuropahatic pain, body temperature chamges, night sweats, vision issues, dizzines, brain fogs, mayor concentration and short memory issues, disrupted sleep, stomach issues, energy in genral was probably a 5-6 on the scale.
I was never the severly ill person like totally house bed bound but the overwwlming of symtomes was horrible.
Now 8 month after valtrex and ofcourse Cq10 and couple other supplements im most likley around 8 on the scale, nerophatic pain when away, stomach is much better no abdominal pain, no chest pain, no dizzines, no POTS very mild some times, muscle pain improved 80-90%, , no vision issues, sleep improved 80-90%, i dont used sleeping aid anymore, still have mild concentration issues sometime but never like before, brain frog almost none, very vert little, no changing in body temperatute or nigh sweats anymore.
That is my experiance with antivirals.

May I ask, have you obtained a diagnosis of CFS/ME from your doctor? Also how would you rate your symptoms on this CFS/ME scale before and after antiviral treatment?

The reason I'm curious is, I haven't read stories here about Valtrex improving dramatically anyone's CFS/ME symptoms. I know some people take it because they feel it's mildly beneficial, but even those people have mostly moved to another antiviral: Famvir. Martin Lerner looked into treating CFS/ME with Valtrex already in the 80's, but I haven't seen any results that make me think it was much effective.

From what I've read recently, Montoya seems now mostly interested in Valcyte, which is a very different drug from Valtrex even though both are antivirals as well. Valcyte has immunomodulatory action and reduces microglial activation according to some recent findings. The stories about dramatic improvements I've read are usually with Valcyte, not Valtrex.

 

[NelliePledge]

@NelliePledge . there are other anti-virals if you decide to add on more. These are the ones that are helping me. Cats Claw (this is strong!) Licorice root, L-lysine, Vit. C, Zinc, lemon balm.

thanks Tammy/Knock Knock Ive heard from friends on another forum about lysine too

 

[NelliePledge]

May I ask, have you obtained a diagnosis of CFS/ME from your doctor? Also how would you rate your symptoms on this CFS/ME scale before and after antiviral treatment?

The reason I'm curious is, I haven't read stories here about Valtrex improving dramatically anyone's CFS/ME symptoms. I know some people take it because they feel it's mildly beneficial, but even those people have mostly moved to another antiviral: Famvir. Martin Lerner looked into treating CFS/ME with Valtrex already in the 80's, but I haven't seen any results that make me think it was much effective.

From what I've read recently, Montoya seems now mostly interested in Valcyte, which is a very different drug from Valtrex even though both are antivirals as well. Valcyte has immunomodulatory action and reduces microglial activation according to some recent findings. The stories about dramatic improvements I've read are usually with Valcyte, not Valtrex.

Valcyte is the one MEA were talking about UK trials for