UK: Has anyone had their gut flora deficiencies sorted out in an NHS clinic?

[Sasha]

Just had some private testing done and I'm highly deficient in some important microflora.

In an ideal world, I'd like to go to an NHS GI specialist who knows about this stuff and would knowledgeably treat it with pre- and probiotics and support the therapy with appropriate testing (which is very expensive done privately).

I have no clue where the NHS is with all this microbiome stuff. Are they up to speed? Is it only patients and non-NHS doctors who are trying to "heal our guts" with this approach? Would I turn up at a GI clinic and get laughed out for looking at "fringe" stuff?

If you have had experience of trying to get a functioning microbiome reinstated via the NHS, I'd be interested in hearing about it. PM me if you prefer.

 

[ukxmrv]

I was seen at a NHS hospital in London by a couple of Gastroenterologists a couple of years ago. One was open minded and I am sure would be interested in the microbiome stuff. He may have even read some of it by now. This doctor had pupils present at my examination and pointedly told them how IBS often resulted from an infection. He also told them about SIBO and tests and treatment. When I saw him I had a bad case of food poisoning. There was no instruction being given on the microbiome. The SIBO was seen as bacteria that needed to be killed off by treatment rather than as an ecosystem of different bacteria.

The 2nd Gastro I saw wasn't interested in infections or SIBO or tests/treatments. I doubt if microbiome would have caught his attention.

The better Gastro I saw on the first visit had left the London hospital and London. It's possible that the attitudes of the 2nd doctor are prevalent there and he's gone somewhere with different attitudes.

It's going to be the usual trial and error I am afraid. I've not heard of any London ME patients having this treated through the NHS as yet.

 

[Sasha]

Thanks, @ukxmrv - I'm really looking for someone with expertise rather than someone who is catching up. I wonder if Doctor #1 has got there yet. I can imagine doctors reading up on stuff but not wanting to try it without having picked up clinical experience from someone who is using it.

 

[Sasha]

This NHS Choices thing on probiotics suggests that microbiome science hasn't reached the NHS mainstream:

http://www.nhs.uk/conditions/probiotics/Pages/Introduction.aspx

There's also evidence, albeit weaker, to suggest they may help in treating irritable bowel syndrome (IBS), lactose intolerance and a complication of ulcerative colitis treatment. It is also thought that probiotics may help protect some premature babies from developing a dangerous gut disease.

However, until more research is carried out, it's uncertain whether the benefits stretch any further than that. Generally, it's hard to see how swallowable bacteria could have an effect on conditions outside of the digestive tract.​

 

[aimossy]

@Sasha sorry I can't really offer any ideas. Research isn't there yet for this gut stuff - hopefully we will be up there with the first groups of people that will have this happening. Maybe. Do you mind saying what your testing looked at and what you were deficient in as it is really interesting stuff. I'm considering getting some analysis done on myself privately for interest.

 

[Sasha]

@Sasha sorry I can't really offer any ideas. Research isn't there yet for this gut stuff - hopefully we will be up there with the first groups of people that will have this happening. Maybe. Do you mind saying what your testing looked at and what you were deficient in as it is really interesting stuff. I'm considering getting some analysis done on myself privately for interest.

I've got no lactobacillus and am very low on bifido. The report was surprisingly cryptic, otherwise!

I'd have thought that doctors treating IBS at least would be at the forefront of getting bench-to-bedside on this and that if we could rock up to a clinic waving our test results that our guts could get addressed. But maybe our NHS IBS doctors aren't even there yet...

 

[aimossy]

Thanks @Sasha have you looked at Maureen Hanson's Poster on her microbiome study? It would be interesting if people have anything in line with her findings. Interesting about the lactobacillus for you as well! I will find that poster and put it up here. Gut research has never been sexy and very underfunded in general. Madness considering how many in the population need gut problems looked into constantly within public heath. It is sad too. They do seem to be on the verge of some big changes in the gut area though due to microbiome work.

 

[Sasha]

have you looked at Maureen Hanson's Poster on her microbiome study? It would be interesting if people have anything in line with her findings. Interesting about the lactobacillus for you as well! I will find that poster and put it up here.

Can't remember the Hanson study - I expect all this stuff will start sticking now that I've identified a problem. Thanks - I'd appreciate seeing it!

 

[ukxmrv]

The NHS website has some IBS clinical trials and there are a few interesting ones like yoghurt (one by Danone) and other things

Sadly CBT tends to feature there as well

http://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/clinical-trial.aspx

 

[Sasha]

The NHS website has some IBS clinical trials and there are a few interesting ones like yoghurt (one by Danone) and other things

Sadly CBT tends to feature there as well

http://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/clinical-trial.aspx

That's interesting - I see that one of the trials has luminal bifido concentration as its primary outcome measure.

 

[aimossy]

Altered Gut Microbiome in ME/CFS Patients in Comparison to Healthy Controls

Maureen R. Hanson1, Ludovic Giloteaux1, Julia K. Goodrich2, Susan M. Levine1,3, and Ruth E. Ley1,2
1Cornell University, Dept. of Molecular Biology and Genetics, Ithaca NY, 2Cornell University, Dept. of Microbiology,
Ithaca NY 3Private Practice, New York City
Objectives. As well as the symptoms of fatigue, pain, malaise, immune dysfunction and exercise intolerance, Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is associated with a variety of gastrointestinal complaints. In
order to investigate the possible basis of this comorbid condition, we undertook a study to determine whether the gut
microbiome in a ME/CFS population from the New York City area differs from healthy individuals.

Methods. We characterized the gut microbiota of a cohort of 48 patients with ME/CFS and 36 healthy controls from the
New York City region by sequencing amplicons of the V4 region of 16S rRNA genes using the Illumina platform. Of the
ME/CFS subjects, average age was 50.6 ± 13.3, 38 were female and 10 were male, while of the controls, average age was 46.5 ± 9.7, 29 were female, 7 were male. All patients fulfilled the Fukuda criteria for diagnosis of CFS. Levels of markers
of inflammation, i.e. lipopolysaccharide (LPS), soluble CD14 (sCD14) and lactoferrin (LF) levels were also determined in
plasma samples using standard assays.

Results. We obtained an average of 140,000 (± 86,000) high quality reads per sample. In both cases and controls, the
most represented phyla were Firmicutes, Bacteroidetes, Proteobacteria, and Actinobacteria. Comparisons between cases
and controls indicated a shift of diversity in the patient cohort. Statistical analysis revealed significant differences
between groups, i.e. a reduction in members of the Bacteroidetes and an increase in members of the Firmicutes in the
patient population, also reported in Crohn’s disease and acute ulcerative colitis. Specific species, including reduction of
butyrate-producer Roseburia faecis (p = 0.001, q = 0.03) and increase of Ruminococcus spp. (p < 0.001, q = 0.004), were
detected in subjects with ME/CFS. The amounts of LPS, sCD14 and LF in plasma in our cohort were not statistically
different from controls and fell within normal ranges. Our data do not corroborate prior reports of significantly higher
levels of Lactonifactor, Alistipes and Enterococci in the feces of patients.

Conclusion. Subjects with ME/CFS in our cohort have a shift in overall microbial composition in comparison to healthy
donors, a finding also characteristic of patients with inflammatory bowel disease. Our analyses highlight the contrast
between the distribution of anti-inflammatory species, such as Roseburia species, which are more prevalent in healthy
individuals, and potentially pro-inflammatory Ruminococcaceae, which are associated with irritable bowel syndrome and
found to be more frequent in ME/CFS cases. Despite the differences in gut microbiome, three inflammatory markers did
not differ between patients and controls in plasma. Whether deliberate manipulation of the composition of the gut
microbiome in ME/CFS patients may ameliorate symptoms in some patients remains to be investigated.

@Sasha it will be good to see the full paper when it is published.