Updates from the Ugandan pilot study

We have some interesting news from Uganda, four months into the year long investigation. Patients enrolled on the programme are reporting interesting and exciting responses - and as importantly, no negative reports. Early days yet, but extremely encouraging. (Please see below for more information).

First, another bleak and alarming report from those at the epidemiological coalface of drug resistance. This article explores some of the dreadful ethical dilemmas facing those trying to flight this disease in its worse drug resistant forms. It also discusses the awful reflection of our failing humanity which this disease holds up in front from of our eyes if we care to look the scourge honestly in its face. The title of the article makes no bones about this: "Apocalypse or Redemption".

http://www.who.int/bulletin/volumes/87/6/08-051698.pdf.

With the subsequent phases of this project planned to include taking it to Nyanga township in Capetown (where drug resistance is rampant) and hopefully from there to the School of Natural Medicine in the University of the Western Cape for more rigorous research, what we're now revealing in Kampala is proving immensely exciting. Patient responses are promising with no reports of negative effects - as good as we could reasonably have hoped for at this stage, and we have full support from the local health workers The reality that these simple treatments could actually save otherwise unsaveable lives seems to be tentatively materialising out of the dreamier realms of hypothesis into a misty dawn of real possibilities.

What we think now is that simple moxa treatment really can make a difference - no longer "might" but "can". Step by step we are systematically testing potentials, and with each step we are becoming more confident of its ultimate possible significance. But the responsibilities associated with this grow exponentially as well. We have to keep watch over both the bigger picture (properly developing a systematic progressive investigation with the final goal of rigorous recognisable research) and the smaller picture (the day to day humanitarian welfare of patients enrolled on the programme in Uganda).

At this stage we never intended to be amassing anything that might satisfy a rightfully sceptical medical world. First and most importantly, we have to satisfy ourselves and potential funders or collaborators – beyond reasonable doubt.

We have focused so far on 7 possible identifiable improvements:

a) sleeping - improved in nearly every case, either because of reduced coughing, less sweating or (in one case) because of an inability to lie on one side because of water in a lung which had apparently resolved with moxa use.

b) breathing and coughing - improved in every case but one (who wasn't using the whole protocol), including one who stated that the coughing had stopped completely after only a week's treatment.

c) energy and strength - improved in every case but one.

d) appetite - improved in every case. This suggests that deeper self-healing mechanisms may be being re-engaged in a naturally wasting disease.

e) weight gain - this was reported in nearly every case.

f) joint pains - in every case except one was positively commented upon, sometimes very positively.

g) blood counts - unfortunately we had no reports on this. The local CD4 count lab had broken down so this data may prove difficult to confirm, but they are hopeful that it will be repaired.

There were important questions we needed to have answered to some degree by this stage, and we list them below, together with their current answers:

1. Are we satisfied that the 1930's Japanese reports on which we are basing our protocol approaches were bona fide?

Based on the recent visit, we can be confident that this is not only "yes", but that they were far from exaggerated. The tradition of treating TB in Japan with moxa no longer survives today so this had always been a fundamental concern.

2. Do we think that these approaches might be applicable and transferable today in Africa?

Based on the earlier visits (which confirmed that African health workers and patients were open to direct moxa therapy) we already believed that this would be the case. Based on seeing the patients last week, this is confirmed with one proviso: it's clear that for many reasons there has been a high dropout rate from the total cohort; it is to be expected that this phenomenon is likely to repeat in the future, so we need to develop strategies accordingly.

3. Do we think that moxa can be taught so that it is both safe and effective?

Based on the responses so far, the answer is unequivocally "yes".

4. How effective do we think moxa might be?

The best answer we can give right now is - every possibility exists that it could at least contribute to saving lives, and importantly might save lives when other treatments fail or are unavailable.

5. Do we think that moxa might help treat drug-resistant TB?

Over half the patients were relapsed drug failures, so can be assumed to carry resistant strains. Based on their responses, the answer is "yes" but much more information needs gathering on this massively important group.

6. Do we think that it is also applicable for use in cases of co-infection with HIV/AIDS?

This vital question remains unanswered at this stage. Two reasons to be cautiously hopeful in this immensely important regard remain, however: firstly, the response we witnessed from a dying co-infected patient in Lyantonde last December (see “the Acupuncturist” date….); secondly our limited experiences with HIV patients in the UK suggests that daily moxa treatment significantly can improve CD4 count.

7. Might it have a negative effect on parallel drug regimes?

No-one reported that they had stopped taking their drugs which was encouraging. Side effects may also have been being reduced.

All told, we think we've now satisfactorily proved that the reports we uncovered from Japan from eighty years ago weren't exaggerated, and that the treatment protocol we’ve developed is basically safe and adaptable to Africa. It's our responsibility now to develop this project as carefully as we can.

The next steps.

We’re looking at maintaining as stable a Ugandan cohort as possible of around seventy patients, reinforcing the data gathering processes so that we can get a wider survey of responses from this group, including rates (unfortunately) of mortality and morbidity.

We will continue to recruit using three challenging criteria:

1. Drug failure/relapse.

2. Weak and struggling patients as identified by the health workers

3. Co-infected patients.

We have agreed one over-riding golden principle with the participating health workers (whose skills and dedication we are in awe of): that we proceed with the programme with two parallel aims - investigation and helping patients - with neither having priority. In other words if it is felt a patient might benefit from being taught moxa but might not actually benefit the investigation, that this should not prevent them being taught and supplied with moxa. Meanwhile, we will collaboratively learn as much as we can so that we can refine wherever possible.

We are desperate to maintain financial momentum to feed the project. We find ourselves simply too far away from the smooth tarmac of middle of the road research to be considered feasible by biomedical funders, whilst ironically we’re considered too biomedical by those funders who normally fund projects in the developing world – we quite simply fall between these two stools. Our budget, meanwhile, is (and has to be) peanuts, and our resource is proportionately diminutive. The frustrations these factors create for us are immense - we are left spending more effort and energy fundraising than actually progressing the project.