Attacking cystic fibrosis at its roots.

[2greys]

Breakthroughs in cystic fibrosis are finally happening. While the latest CF headlines tout a new genetic treatment that targets its underlying cause, a major challenge still remains: How will we get rid of the chronic lung infections that plague CF patients? A Michigan State University scientist is trying to understand how these complex infections cause such a terrible disease.

Through a $2.7 million National Institutes of Health grant, MSU and Spectrum Health are examining the ubiquitous anaerobic bacteria found in all CF patients, which are often dismissed as a non-factor by scientists.

msutoday.msu.edu/news/2019/...

[cofdrop-UK]

Another good interesting find 2greys - thank you.

Cx

[Jaybird19]

didnt know about this . I am 20 yrs out of date but we did not look for anaerobes in Public Health lab ,and we were usually more up to date that most hospital labs. as senior staff we did read up most of the published work relating to our subject and had a weekly meetings to discuss.

so CF' s should draw attention to this and request anaerobic culture.

incidentally my stepgrandson was falsely diagnosed as CF at 2 yrs old but was sent to the expert at that time in St James ? in Leeds, and in fact had extreme allergies. He is now in his late thirties and thriving.

[Hidden]

Completely threw me at first with the reference to ‘genetic treatment’ and subsequent wording: I’d strongly argue against trikafta (or any of the precision meds) being described like that and yet again want to shout as loud as I can that THESE MEDS DO NOT WORK FOR ALL CF PATIENTS, and they are absolutely not a cure for cf by any stretch of the imagination: in up to a third of cases some are very poorly tolerated and come with only a mean 4 to 6% increase in fev1 in the case of Orkambi. Whilst able to increase Fev1 by as much as 15%, Trikafta is no more relevant to the 10% of patients worldwide (almost 9000 people, which - to put it in perspective - is not far off the entire cf population in the UK currently) not carrying a copy/2 copies of DelF508 than Orkambi, Symkevi or Symdeko or any other precision medication currently in development, and the incredibly poor and somewhat biased media coverage of the issue is absolutely doing my nut at this point.

Moving on to the actual content of the article, I completely agree that further understanding of

Anaerobes is required (and interactions within the lung biome generally) and welcome any and all research into that, but our experience is that these bacteria are not entirely ignored in the UK at tertiary service level. They’re usually considered as a culprit of last resort, but they are considered by the cf centres and documented if cultured, particularly in patients who are failing to respond as expected over a more prolonged period. It is nice to see the authors acknowledge that even with precision meds, lung infection is still an issue, though, and it’ll be interesting to see how much headway they can make.