Robert 1973
Senior Member (Voting Rights)
Anecdotal evidence of improvement following anti-fungal treatment
As some of your may recall, when Graham McPhee was in hospital with recurrent sepsis, his son @IanMcPhee reported that he had been prescribed anidulafungin (an IV antifungal drug), following which he noticed improvement in his long-term ME/CFS symptoms as well as the acute symptoms for which he was admitted to hospital. (See: https://www.s4me.info/threads/updates-on-graham-mcphees-health.17583/page-15#post-331376)
After Graham was discharged from hospital, I wrote to him privately to ask him whether he thought the anidulafungin had had any effect on his ME/CFS symptoms.
Graham was typically helpful and forthcoming. As he indicated that he was happy for me to share the details of what we discussed, with the permission of Ian and his mum, I have pasted some excerpts from my private conversations with Graham in a separate post below.
In summary, Graham noticed a marked improvement in his ME/CFS symptoms following a 10 day course of IV anidulafungin, which he was prescribed along with IV antibiotics when he was in hospital with recurrent sepsis and Covid-19. Initially he noticed improvement in his sinus symptoms and headaches. Later he noticed a marked reduction in PEM, despite having had recurrent sepsis for 18 months and a nasty Covid-19 infection at the age of 71.
I was particularly interested in Graham’s experience because I have had some improvements – including improvement in sinus symptoms – after courses of different oral antifungal drugs.
Following my conversations with Graham, I asked two of my former consultants if they would be willing to write to Pfizer to ask if they would be willing to supply anidulafungin free of charge for a case study. One kindly agreed, but Pfizer was not willing to help. They were however interested enough to write to me to ask me to complete a form to record adverse events and unexpected therapeutic benefits, which I did with the help of Ian and his mum.
At that time, I mistakenly thought Pfizer owned the patent for anidulafungin. However, I subsequently discovered that the patent has expired which means there would be little or no incentive for them or any other pharmaceutical company to invest in any trials. The benefit of it being out of patent is that it is less expensive but I understand the cost would still be about £1200 per week + the cost of administering it, which would probably be in the region of £4000 per week at a private hospital (if it was possible to find a private physician willing to prescribe it).
Had Pfizer been willing to fund an open label case study, I would have been interested to try it, as I am desperate to try any treatment that has a low probability of making me worse – even if the probability of it helping is very low. However, I doubt that I would pay to have it privately at this stage – although I haven’t ruled it out. [If the cost was £10,000 and the chances of it having a significant beneficial effect were more than 1%, that would equate to less than £1 million for a 100% change of significant benefit.]
The reason for posting here is to put the information in the public domain and to see if anyone has any thoughts about it – particularly whether anyone can conceive of how or why it might have had a therapeutic effect. (I will post some links to relevant papers that Graham sent me in a separate post below.)
I have already written privately to some ME/CFS researchers about it, including Simon Carding and Chris Armstrong. They both noted the information with interest but neither would be able to do a case study without a prescribing physician, and neither is in a position to take it further at this stage.
As some of your may recall, when Graham McPhee was in hospital with recurrent sepsis, his son @IanMcPhee reported that he had been prescribed anidulafungin (an IV antifungal drug), following which he noticed improvement in his long-term ME/CFS symptoms as well as the acute symptoms for which he was admitted to hospital. (See: https://www.s4me.info/threads/updates-on-graham-mcphees-health.17583/page-15#post-331376)
After Graham was discharged from hospital, I wrote to him privately to ask him whether he thought the anidulafungin had had any effect on his ME/CFS symptoms.
Graham was typically helpful and forthcoming. As he indicated that he was happy for me to share the details of what we discussed, with the permission of Ian and his mum, I have pasted some excerpts from my private conversations with Graham in a separate post below.
In summary, Graham noticed a marked improvement in his ME/CFS symptoms following a 10 day course of IV anidulafungin, which he was prescribed along with IV antibiotics when he was in hospital with recurrent sepsis and Covid-19. Initially he noticed improvement in his sinus symptoms and headaches. Later he noticed a marked reduction in PEM, despite having had recurrent sepsis for 18 months and a nasty Covid-19 infection at the age of 71.
I was particularly interested in Graham’s experience because I have had some improvements – including improvement in sinus symptoms – after courses of different oral antifungal drugs.
Following my conversations with Graham, I asked two of my former consultants if they would be willing to write to Pfizer to ask if they would be willing to supply anidulafungin free of charge for a case study. One kindly agreed, but Pfizer was not willing to help. They were however interested enough to write to me to ask me to complete a form to record adverse events and unexpected therapeutic benefits, which I did with the help of Ian and his mum.
At that time, I mistakenly thought Pfizer owned the patent for anidulafungin. However, I subsequently discovered that the patent has expired which means there would be little or no incentive for them or any other pharmaceutical company to invest in any trials. The benefit of it being out of patent is that it is less expensive but I understand the cost would still be about £1200 per week + the cost of administering it, which would probably be in the region of £4000 per week at a private hospital (if it was possible to find a private physician willing to prescribe it).
Had Pfizer been willing to fund an open label case study, I would have been interested to try it, as I am desperate to try any treatment that has a low probability of making me worse – even if the probability of it helping is very low. However, I doubt that I would pay to have it privately at this stage – although I haven’t ruled it out. [If the cost was £10,000 and the chances of it having a significant beneficial effect were more than 1%, that would equate to less than £1 million for a 100% change of significant benefit.]
The reason for posting here is to put the information in the public domain and to see if anyone has any thoughts about it – particularly whether anyone can conceive of how or why it might have had a therapeutic effect. (I will post some links to relevant papers that Graham sent me in a separate post below.)
I have already written privately to some ME/CFS researchers about it, including Simon Carding and Chris Armstrong. They both noted the information with interest but neither would be able to do a case study without a prescribing physician, and neither is in a position to take it further at this stage.
Last edited:
