I was thinking tonight about an NHS chronic fatigue/ME programme that I attended many years ago - before the funding was cut. There were 12 of us on the course, 2 teenagers, the rest in 30's and 40's, different stories of course, but one thing in common. It seemed all of our descents into ill-health had begun, or been associated with time-wise, digestive issues.
I was wondering if other members of this forum had similar experiences, or not?
There is a lot of current research interest in the gut microbiome and how it could trigger some of the many physiological changes that happen in ME, and how it may even be an auto-immune condition related to gut infections or dysbiosis.
It might just be a stray thought, and it was just a coincidence that all 12 of us on the course had GIT problems, but I would be interested to hear others thoughts.
Written by
sickandtiredgirl
To view profiles and participate in discussions please or .
I have seen a Kenny de Meirleir presentation that gave some reasoning why a leaky gut could be caused by a change in the flora and fauna that make up 60% of the immune system. My own experience was a feeling of having the worst flu then things got worse as I tried ignoring it so I could finish up for Christmas holidays but it was sudden onset not a gradual deterioration in health the reduction in GcMAF that de Meirleir suggested with digestion malfunction. Always interested in looking at symptoms for causality as I think many things come together so that each case will be individual causing a difficulty in providing a gold standard test where all cases can be diagnosed with a certain result. We may get groups (phenotypes) that fall within a broad description Stephen Holgate suggesting as many as fifteen under the same disease umbrella depending on selection criteria.
Thank you for your response. I think a bad case of 'flu is what tipped me from 'just' fibromyalgia to fibromyalgia and ME. Just like you, it was just before Christmas and I kept working until I couldn't anymore. I must do some research on Stephen Holgate's work, I hadn't heard of the 15 sub-groups of ME before.
My fibromyalgia was diagnosed after the M.E by a rheumatologist that was seeing me for rheumatoid arthritis breaking the news I had one more for the list.
Trying to understand a cause is at present the best way of managing our own symptoms, finding our own best responses by trial and error.
I can't pin point any particular time when it came on I remember always having upset stomachs all the time and I was off school regularly was always in trouble for it. The more I think of instances the more I think I've always had it from a young age. It became more aparent after being treated for helicobacter in 2013 which they still were not definite on I just didn't get better I was working in a school and came down with everything going. I would agree it is definitely auto immune related. Studies show activated T cells. Alot of articles say that it is also low number of white blood cells, low blood volume changes in brain metabolism, and a small fraction of an inch in the cerbal cortex shaded grey this is the proof it's a neurological condition.
I haven't experienced digestive issues with ME, however I do feel a whole lot better when I avoid certain foods including wheat & gluten & stick to a simple diet of protein & veg. I do wonder about the impact GMO foods are going to have health as they become even more widespread.
My issue appears to stem from repeat viral infections & I have not reached optimal health again since having pneumonia back in 2008. The crash for me came in 2013 after serious of emotional incidents & years of stressful working.
Thank-you for sharing your story with me. I'm sure I'm gluten intolerant, but my coeliac test has come back negative twice. If I eat gluten I get mouth ulcers, skin rashes and awful abdominal pain and bloating, so that's evidence enough for me to avoid it.
I hate the thought of GMO's coming to the UK. If you look at the functional medicine websites in the US, they are all of a mind that the widespread consumption of GMO foods over the last decade or so has caused an epidemic of auto immune disease in the USA. It is hypothesised that the GMO crops increase the presence of leaky gut, setting you up for all sorts of auto immune conditions. And then when you read about what the GMO crops do to the local bee populations
Do have gastrointestinal problems but the classic ME is acute onset with a flu-like illness. Obviously GI symptoms can be one part of that.
As enteroviruses can live in the gut long term this is an interesting area.
The trouble with the NHS chronic fatigue services is that they are open to a wide cohort of patients with chronic fatigue rather than specifically to ME, so the people in the group may not all have had classic ME so it's impossible to comment whether that is significant.
The day when the NHS stops lumping chronic fatigue together with the complex disease ME of which fatigue is just one of many symptoms and not the main symptom, can't come soon enough!!
Thanks for bringing up the digestive issues topic as it's an interesting area and is one of the symptoms in the more specific criteria for CFS.
Yes, my illness began about 10 years ago with an escalation of long standing IBS problems, new food sensitivities, pain in my gall bladder region, anxiety and sleep difficulties - this was the start of my mild ME. 5 years ago it stepped up to moderate after a string of viruses.
4 years ago my daughter developed mild ME with the same pattern of food sensitivities, anxiety and sleep problems. She hadn't had IBS previously but bladder pain instead.
There is a pattern of similar illnesses on my mother's side of my family. Oddly we all have sensitivities to different foods.
Thank you for your response. Just as I read it I was listening to a podcast by Dr Leo Galland on the links between gut infections / dysbiosis and chronic fatigue and fibromyalgia. You can access the talk which is part of a week of presentations as part of the healthy gut summit at:
It's only available to listen to free today and part of tomorrow, so I hope you see this message in time, I think it's really interesting. Fibro and ME run in my family also, so I was interested to hear him speak about treating the whole family for gut infections, even if most family members have no symptoms. I've also read that gut dysbiosis can be a cause of interstitial cystitis that causes bladder pain.
"Although M.E./CFS must have a biological cause, the nature of that cause is controversial. We are exploring the hypothesis that M.E./CFS is an entirely new type of disease, a disease that affects multiple systems though the whole body rather than just part of it. Fibromyalgia and irritable bowel syndrome (IBS) may also be this new type of disease. We wish to examine whether and, if so to what extent, the symptoms of people with M.E./CFS overlap with those who have been diagnosed with fibromyalgia and IBS, and vice versa. This study is being advertised on this website but it is also being advertised on self-help websites for people with fibromyalgia and IBS. We shall compare the frequency of symptoms of people who have been given different diagnoses."
I had IBS throughout my twenties and often became ill with 'viruses' (according to the doctor) from which I recovered. Just before my 32nd birthday I got another virus from which I didn't recover. I do think that my IBS left my body depleted of nutrients and played some part in my illness. I found a largely gluten-free diet helped with the IBS. In 2001 I was also diagnosed with Hashimoto's disease four years after I got M.E. and I think that played a part too. It took me 10 years to find some stability for my M.E by being on sufficient thyroxine and cutting down on gluten. I'm not better by any means but better than I used to be. I still suffer crippling fatigue which is life-limiting.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Daughter diagnosed CFS-ME, struggling with professionals different views and attitudes.
How did covid jabs affect your ME/CFS?
Dealing physically and emotionally with the “fall out” from seeing old froends