Discussion in 'Other Health News and Research' started by Kyla, Jun 3, 2015.
The patients are all from one clinic, but this seems to be interesting evidence for autoimmunity or an autoimmune connection in POTS.
I think we badly need this reproduced in a population based cohort - i.e. with no opportunity for referral bias related to the presence of these markers in the first place. If a patient has autoantibodies they are probably more likely to get referred on for some other problem simply because doctors may feel a greater need to check things out. These associations do seem to come up time and time again - but it might be for the same spurious reason each time. I suspect that population based studies may be very hard to do in the US. Maybe they should be done in Iceland, or UK or Scandinavia or somewhere with pre-defined population cohorts from other studies.
to stir the pot a little bit, there is this case report:
Dr. Kem (author of one of the previous studies on antibodies in POTS) recently received a $200,000 private grant to do further studies on this topic. No indication as to whether they are population based or not - this was recent so they may not have even designed the study yet.
Out of curiosity, why these particular three countries? Because they have smaller populations?
Because they have well defined population based cohorts already set up. Iceland has the advantage that the population is very static and everybody knows their family tree back to 900 AD (or so I am told. At 300,000 it may actually be too small, but there are procedures worked out for trawling through whole populations. Scandinvavia is a bit similar and there have been very good population based studies from Norway and Finland. The UK has population based cohort procedures going back to the 1950s although these are probably not so much used now and need to reinforcement. There are population based cohorts in the USA and Canada as well but populations tend to be more mobile there and distances greater. It is really all a matter of logistics.
On the Cyclophoshamide and Rx update started by @deleder2k, Prof Mella or Fluge state that for the people with ME who participated in their first study, 45 % had autoimmune diseases in their close family. I know numbers were pretty small but they see that as relevant.
In our family my daughter has ME (with autoantibodies to pyruvate kinase receptors of the basal ganglia) and her older brother has Type 1 diabetes. Another family in our town has a Mum with ME and her son with Type one diabetes. Maybe we should do a survey on PR?
I have ME + Pots + an Autoimmune disease. And BOTH of my parents have autoimmune conditions. So this line of research definitely resonates with me.
I agree it would be interesting to see who has family history or co-morbid autoimmune.
The difficulty with surveys on forums is that there will be participation bias. More people with autoimmune family histories will participate than those who do not. I did a quick survey of thyroid problems a while back and it was positive enough for me to think that a proper study should be done, but a worthwhile study has to be done on a population derived cohort. Reporting bias in controls has to be carefully weeded out. There is certainly a suggestion of increased family history of autoimmunity in previous studies but I am not sure any of them are adequately bias free.
You can also try a Google Site Search
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