One of the exercises we have been undertaking in Achalasia Action is trying to work out what research would gain most support from those with achalasia. After all, people with achalasia are the ones most affected!
So this is a brief summary of our work so far, and we would value any comments, suggestions and votes in our poll on this topic.
Looking at research papers, there are plenty of medical studies on surgical procedures such as Heller's myotomy, POEM, dilatation and so on. It is the sort of thing that naturally occurs in the medical world to analyse procedures, so we think that there is not so much that we can helpfully contribute there.
a) A few years ago, Guts UK awarded a Derek Butler Fellowship to Dr Conor McCann to examine the possibility of stem cells being transplanted into the digestive system to allow nerves to reconstitute themselves. This funding ended at the end of 2020, but could be very promising and is the nearest prospect of a 'cure' for achalasia. Conor is continuing similar research for elsewhere in the digestive system at University College Hospital, and things are at a very theoretical stage with no immediate prospect of being translated into treatment for hospital patients. Like many research projects it is hampered by the current CIVID crisis.
b) Professor Giovanni Zaninotto has been involved in the I-PASS study ( International Patient reported outcome of Achalasia Symptom Score) to try to identify best practice for the treatment for achalasia so that there is better understanding of what treatments work best in what is an under-reported and rare disease. The project is basically to identify a standardised outcome measurement tool that can allow comparison between treatments
c) Melika Kalantari at Reading university is working on a project that has been based on interviews with members of Achalasia Action to develop best advice for coping with eating for somebody with achalasia. It is looking at the impact of achalasia on people, identifying gaps and shortfalls in management, and from this deriving tools that can be used to help patients. The latest output is titled ‘Co-designing an intervention to change eating behaviour in people living with achalasia’.
d) Pain Relief for Spasms. This comes up as a high priority in our discussions to date, and we aim to try and identify a clinical research fellow working for a consultant with an interest in achalasia who would investigate the various medications (nitrates, calcium channel blockers, anti-spasmodics and tricyclic) that are most effective in relieving pain.
e) What is the best diet advice? There are some basic issues like avoiding food with textures or skin that is not easily digestible, food that can coagulate (like rice, white bread) or likely to cause irritation (spicy foods) but could the food we eat make a difference to chemical imbalances that might make a difference to potential worsening of achalasia over time? This may also be a future project.
f) Are there any techniques to improve the swallowing process? Perhaps there might be ways of training ourselves to improve how we swallow and make best use of what muscle function exists?
g) Are there any links to helpful research findings for associated illnesses that might benefit achalasia (eg Chagas disease, shingles, chicken pox, some auto-immune conditions)?
h) What genetic /DNA or other biomarkers or inflammatory markers are typical for achalasia, and, if relevant, can these be translated into curative therapy?
Research projects can tend to be initiated and organised by medical practitioners, but a 'patient voice' about priorities can be a really important factor to take into account on what projects get funded. So we would really welcome your views and suggestions! Click on polls and register your vote! (Click on the home button and you should see the Poll section half way down on the right)
