Though not a ME/ CFS patient, I have joined this community in order to post this message about a recent article that appeared in my "Inside Precision Medicine" newsfeed, a digest of cutting edge medical research. Here is the web-link insideprecisionmedicine.com...
The article may be a bit technical for some and not detailed enough for others. For the boffins, there are further links to both of the scientific publications mentioned.
As many sufferers will know, it took decades for ME/CFS to be recognised by the medical establishment as a disease with physiological causes, though the pathology remains something of a mystery.
According to the NHS:
" It's not known what causes ME/CFS, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness. Suggested causes or triggers for ME/CFS include:
viral infections, such as glandular fever
bacterial infections, such as pneumonia
problems with the immune system
a hormone imbalance
your genes – ME/CFS seems to be more common in some families"
The current research identifies "robust bacterial signatures of gut dysbiosis in individuals with ME/CFS". This is not to say that an imbalance in your gut flora has caused your ME, but that it is associated in some way. Further research will be needed to pin down the relationship and, perhaps, identify new therapies for ME/CFS.
In one of the two studies,
"Analysis fond that patients with short-term disease had a number of changes to the diversity of their microbiomes, notably a depletion of microbes known to be butyrate producers. Butyrate helps protecting the integrity of the gut barrier and is also plays an important role in modulating the immune system.
By comparison, long-term ME/CFS patients had gut microbiomes that had reestablished and were more similar to the healthy controls. However, those participants had accumulated a number of changes in the metabolites in their blood plasma, including many of those related to the immune system. They also had differences in levels of certain types of immune cells compared with the healthy controls".
All this is suggestive of the involvement of the immune system in ME/CFS, and may add weight to earlier accounts:
Thanks very much for the post! I'm in this group because my daughter has CFS, and she does seem to have increased difficulty digesting some foods since she developed the CFS, and in a few cases she seems to be be fine eating the food some days and not fine on other occasions with what seems to be exactly the same thing. I realize there's a chance the ingredients could actually be different - I've got a friend who reacts to some varieties of tomatoes and not others, presumably because they have some different components or balance of components, but any of them would just be labelled 'tomatoes' in a cooked product. But an out-of-balance gut microbiome might explain the situation, and if it's a possible driver then maybe it could be worth experimenting with probiotics that feature butyrate producers.
Thanks for your detailed response dafydd. I'm not familiar with current treatments for CFS, but I do know two young people who have had symptoms, or rather extended episodes, for several years with no end in sight. If that's how it has been for your daughter, like you I would be inclined to try a new approach. Looking after one's gut health is never wasted effort. You might want to have your daughter's microbiome sampled, evaluated, and if necessary rebalanced by dietary means - I'm not sure if the NHS can cope with all that - and hope that it improves the CFS.
If CFS turns out to be an autoimmune condition, triggered by a permeable gut, and featuring gut dysbiosis, there's no guarantee that fixing the dysbiosis will fix the CFS. To quote from my original post:
"The current research identifies "robust bacterial signatures of gut dysbiosis in individuals with ME/CFS". This is not to say that an imbalance in your gut flora has caused your ME, but that it is associated in some way. Further research will be needed to pin down the relationship"
Thanks! I did understand the relationship may not be causative and restoring the gut balance might very well not help, especially since the longer-term patients in the study display restored gut balance; but I appreciate your making sure of that. However, when I have the energy to pursue it, I prefer the idea of trying anything that might conceivably help (and isn't unaffordable) over not trying anything, even if the odds of success are unknown and probably low.
Many thanks for posting. I saw these studies mentioned in various articles / newspapers as well as the ME Association, but it takes time to write a post and link it together.
I think it's some exciting research. It's common for people with ME to experience gut problems and food sensitivites and the link to the immune system from the microbiome is known but research was lacking specifically for people with ME.
Hopefully in the future, those with ME will receive some proper advice on diet and perhaps some earlier interventions might improve outcomes, instead of having to find their own way whilst being told by everyone and their dog that the illness is exacerbated by thoughts and feelings.
I agree. Let's hope that these studies will encourage other research groups to dig deeper into the pathology of ME/ CFS. For sure, that's the way to effective treatment.
Does the "psychosomatic hypothesis" still have traction among GPs and neurologists?
I was once told by a GP that I couldn't have ME as I didn't have the right personality for it and that 'they' were all of a certain type. This particular GP was trying to help me and it was several years ago, but I think the stigma still persists.
As a patient it's bewildering to find that medics can be so opinionated despite their training. Top consultants will freely admit to the limits of current knowledge. The kind of stigmatising, unsupported dogma that you received is enough to make you think of GPs: 'they' are all of a certain type!
Thanks for posting. Yes , it seems to be a link from what I have read too. Before I had my first serious ME relapse -seven years ago-I was eating ready made supermarket meals as I had no energy to cook. All my energy was spend on working. Since then my partner who was commuting from a different country moved in with me- . With their cooking we now eat primarily a healthy plant based diet. The last couple of months we have also become vegan and we both feel a bit better. Mind you though that I might feel better because I am off long term sick leave and have not worked for almost a year ........ Fingers crossed that is due to my changing microbiome 😀
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