Can ME cause or initiate mental illness?

[Hip]

@Hip: thanks for the info on the trigeminal nerve. I never knew about the sinusitis - neuro link through it (I'd assumed that if there could be an interface that it would be meditated by the vagal nerve like most other organs, but anatomically this obviously didn't really make sense)

Yeah, I read this interesting stuff about the trigeminal nerve also being able to trigger brain inflammation and sickness behavior in the following study:

From inflammation to sickness and depression: when the immune system subjugates the brain

"The brain monitors peripheral innate immune responses by several means that act in parallel. One pathway involves afferent nerves: locally produced cytokines activate primary afferent nerves, such as the vagal nerves during abdominal and visceral infections, and the trigeminal nerves during oro-lingual infections."

So both the vagus and trigeminal nerves can detect infection/inflammation in the peripheral areas of the body, and then as a result trigger inflammation and sickness behavior in the central nervous system.

Sickness behavior has symptoms very close to those of ME/CFS.

 

[Aerose91]

I have a lot of neuro issues, as well as having has severe anxiety, OCD at points and agoraphobia so severe I couldn't stand outside my door.

KDM believes that I have a lot of brain inflammation caused by bacterial infections. I have spoken to a lot of Lymies who have OCD . I have Bartonella which causes a lot of psychiatric problems, and others I speak to say this clears up with treatment. I also have Cpn and that bacteria is capable of infiltrating the brain.

I also have quite severe derealisation and feel like a completely different person at times. I have also had instances of waking at night and not knowing what a human is or that I am one.

I'm sorry to hear you're going through all that. I have all those all the time with never any reprieve.

@Martial hope you're doing better, man. I had one test where a positive band came back for Lyme, then I did another test at Stoneybrook and it came back negative so my doctor kinda closed the book on it. Not sire if I should pursue more testing or not but it's kind of a moot point because I can't afford it anyway

 

[Hip]

I also have quite severe derealisation and feel like a completely different person at times. I have also had instances of waking at night and not knowing what a human is or that I am one.

That is a very interesting description of derealisation, Justy, I like it. I don't have this particular condition myself (although I have plenty of others), but the way you described it so succinctly imparts an understanding it what derealisation is like.

 

[Martial]

I'm sorry to hear you're going through all that. I have all those all the time with never any reprieve.

@Martial hope you're doing better, man. I had one test where a positive band came back for Lyme, then I did another test at Stoneybrook and it came back negative so my doctor kinda closed the book on it. Not sire if I should pursue more testing or not but it's kind of a moot point because I can't afford it anyway

@Aerose91

Well you can do a natural treatment approach and buy some herbs in bulk to save a lot of money. He doesn't sound very lyme literate though, according to ILADS guidelines any activity specific to strands of borrelia bacteria proves infection. The part that is still debated is how these respond to treatment, i.e. gaining more anti bodies, finding acute or post infection which may be dormant.

If you have never been treated before and have it in the system very important to treat though. Unlike some other possible causes pertaining to CFS Lyme disease only gets worse until treated, it can also be lethal if you have heart complications, acute encephalitis, or organ failure. You do not need to pay thousands for treatment but definitely look into at least doing something to treat it by what means you can afford. Dr. Stephen Buhner is what I use and its a protocol that can be dirt cheap compared to the rest I have seen.

Anyways thanks man I appreciate the support! how have you been yourself? Didn't you recently move into the desert or something to clear mold issues, how is that stuff going?

 

[justy]

The talk by Professor Hugh Perry at the Action for me symposium for people with severe M.E in London yesterday was about exactly the things discussed above - peripheral infections in the body (bacterial or viral or possibly other prolonged stressors) causing neuro-inflammation (activated microglia) causing sickness behaviour. He says research shows this happening in M.S. Then the microglia in the brain become 'primed' so that they are bigger than normal and more of them and they become supersensitive to triggers causing even more neuro-inflammation and more severe and prolonged sickness behaviour (he also talked about cytokines)

The see this in lots of neurodegenerative diseases. He mentioned LPS and a lot of it was over my head but I know LPS has something to do with gram negative bacteria such as Lyme and Bart that I am struggling with. KDM seemed to be on the case with this.

Professor Perry mentioned the Japanese study, but unfortunately he got hung up on stress as being a cause of activated Microglia for some people (only shown in Mice) and then said that exercise would help (he wasn't talking about for PWME - severe, but he didn't seem to be aware of the nature of severe M.E).

He was asked if they were working on anything to reverse the inflammation by reducing the amount and size of microglia or by reducing their sensitivity once they had been primed, but he said this was not something being looked at, which seemed strange to me.

I would have thought if we extrapolate this out to PWME then we find a lot have Lyme etc and for these people treating the peripheral infections should help the brain to recover... although interestingly the point is that the microglia stay activated even after infection is cleared and once primed they are always going to overreact.

This makes a kind of sense if I think about my own situation because every time I have another illness on top of the M.E my symptoms get worse and barely ever recover back to the point I was at before. It was measles then pneumonia then pleurisy in 2008 that caused my crash down from a mild remission to severe. So if my microglia are already primed, this could cause inflammation in the brain by the over reactive microglia and cause a prolonged and excessive sickness response.

 

[Sidereal]

The talk by Professor Hugh Perry at the Action for me symposium for people with severe M.E in London yesterday was about exactly the things discussed above - peripheral infections in the body (bacterial or viral or possibly other prolonged stressors) causing neuro-inflammation (activated microglia) causing sickness behaviour. He says research shows this happening in M.S. Then the microglia in the brain become 'primed' so that they are bigger than normal and more of them and they become supersensitive to triggers causing even more neuro-inflammation and more severe and prolonged sickness behaviour (he also talked about cytokines)

The see this in lots of neurodegenerative diseases. He mentioned LPS and a lot of it was over my head but I know LPS has something to do with gram negative bacteria such as Lyme and Bart that I am struggling with. KDM seemed to be on the case with this.

Professor Perry mentioned the Japanese study, but unfortunately he got hung up on stress as being a cause of activated Microglia for some people (only shown in Mice) and then said that exercise would help (he wasn't talking about for PWME - severe, but he didn't seem to be aware of the nature of severe M.E).

He was asked if they were working on anything to reverse the inflammation by reducing the amount and size of microglia or by reducing their sensitivity once they had been primed, but he said this was not something being looked at, which seemed strange to me.

I would have thought if we extrapolate this out to PWME then we find a lot have Lyme etc and for these people treating the peripheral infections should help the brain to recover... although interestingly the point is that the microglia stay activated even after infection is cleared and once primed they are always going to overreact.

This makes a kind of sense if I think about my own situation because every time I have another illness on top of the M.E my symptoms get worse and barely ever recover back to the point I was at before. It was measles then pneumonia then pleurisy in 2008 that caused my crash down from a mild remission to severe. So if my microglia are already primed, this could cause inflammation in the brain by the over reactive microglia and cause a prolonged and excessive sickness response.

You see this process taking place in ageing also due to microglial priming. Older adults often develop quite serious and totally disproportionate psychiatric symptoms like delirium or severe depression from relatively minor infections like a urinary tract infection.

http://www.ncbi.nlm.nih.gov/pubmed/23039106

 

[CFS_for_19_years]

@Hip, you said this and then quoted the article below:

"Yeah, I read this interesting stuff about the trigeminal nerve also being able to trigger brain inflammation and sickness behavior in the following study:"

From inflammation to sickness and depression: when the immune system subjugates the brain

"The brain monitors peripheral innate immune responses by several means that act in parallel. One pathway involves afferent nerves: locally produced cytokines activate primary afferent nerves, such as the vagal nerves during abdominal and visceral infections, and the trigeminal nerves during oro-lingual infections."
So both the vagus and trigeminal nerves can detect infection/inflammation in the peripheral areas of the body, and then as a result trigger inflammation and sickness behavior in the central nervous system.

Sickness behavior has symptoms very close to those of ME/CFS

I was going to write you another note about moving sinusitis up to the top of your roadmap instead of having it as a fourth round test, but now I may not have to as I see you've gathered more information about sinusitis in the meantime. What I would like to add is, that in addition to sinusitis, just about any bacterial respiratory infection is going to promote sickness behavior: ear infections, strep throat, pneumonia; there are probably others. This will really put a wrench in the works if you have one of these infections in addition to CFS/ME. I know because I've had a good number of them. I was diagnosed by a PA as having tonsillitis but the lab screwed up the bacterial culture so we'll never know if I really had it or not, but I sure felt better on antibiotics!

Here's the post I made on July 25, 2014:

I would place greater emphasis on treating active bacterial infections such as ear infections and sinusitis. These should be treated right away and not put on the back burner. Even with lots of antibiotics from medical doctors, it took a naturopath to find me the right supplements to help get rid of chronic sinusitis. I'm mostly talking about the first years of CFS/ME when all you do is run fevers, sleep and sweat a lot at night.

Chronic sinusitis, according to my allergist, is a sign of allergies that should be treated with immunotherapy (allergy shots) and avoidance of the allergen (mold, pet dander, dust mites, etc.).

These infections can flatten someone who is already not feeling well. I've read lots of posts from people here who say they feel noticeably better after they've had their sinusitis cured. Sometimes it takes one round of antibiotics and sometimes it takes several rounds of better stronger antibiotics, such as Augmentin (amoxicillin and clavulanate) to cure it.

I'm beat. I've been up all night due to pain. I'll come back and read this later on today and see if it made any sense.

 

[Hip]

I certainly agree with what you are saying, @CFS_for_19_years, and in fact I just recently posted here about my experiences with a chronic recurring kidney / urinary tract infection (UTI) greatly increasing my ME/CFS fatigue levels on the days in which this infection flared up.

In fact originally I placed chronic UTIs in the roadmap of chronic fatigue syndrome treatment as a possible factor that might be present in ME/CFS patients, and which might worsen ME/CFS symptoms. But I later removed this, because I could not find any evidence of UTIs being more common in ME/CFS. Though UTIs are well-known to cause fatigue even in the general population.

At present the roadmap contains a section on sinusitis (sinus infection / inflammation) as an exacerbating factor in ME/CFS, and also a section on hidden jaw bone infections being a causal or exacerbating factor of ME/CFS.

You are right that the sinusitis could probably be moved up higher in the roadmap, perhaps placed in round 2, which lists the common comorbidities of ME/CFS. Jaw bone infections I believe are rare, so that's best left in round 4 I think (the 4th round lists the rarer ME/CFS causal or contributory factors).

The roadmap also currently lacks a section on the various causes and appropriate treatments of sinusitis in ME/CFS patients. Just writing such a sinusitis treatment section would be weeks of research and work (everything goes slowly when you brain fog).


What I would like to know is what other type of chronic or recurring infections might be common in ME/CFS patients, which may worsen the ME/CFS symptoms. And what places in the body can host such infections.

The roadmap I try to keep evidence-based, so I'd need links to published studies before I can include anything (or at the very least, a link to some good anecdotal accounts or surveys).

 

[CFS_for_19_years]

I certainly agree with what you are saying, @CFS_for_19_years, and in fact I just recently posted here about my experiences with a chronic recurring kidney / urinary tract infection (UTI) greatly increasing my ME/CFS fatigue levels on the days in which this infection flared up.

One time I took a tablet of Bactrim (sulfamethoxazole and trimethoprim) that had been prescribed by my doctor as a way to prevent UTI's post coitus (sorry if that's TMI but now you know why I was taking it in the first place). The following morning I started blowing my nose like you wouldn't believe. I happened to be at work and kept blowing my nose about every 30 minutes and a ton of thick yellow-green junk came out of my nose (again sorry if it's TMI).

I called my doctor's office from work, described what happened, and they authorized a full prescription of Amoxicillin for me to pick up from the pharmacy. I didn't even have to go in to see my doctor, and I'm in a very conservative HMO that balks at prescribing unnecessary antibiotics. Of course, I'd been in to see my doctor every month for the past year to treat other things like ear infections, nausea, fevers and god knows what else. I had CFS/ME at the time this was all happening, in the first two years of my illness when I could still work part-time, until I wore myself out and never returned to work again.

You are right that the sinusitis could probably be moved up higher in the roadmap, perhaps placed in round 2, which lists the common comorbidities of ME/CFS.

I believe they should be in round 1, maybe @Jonathan Edwards would like to weigh in.

 

[Hip]

I believe they should be in round 1,

Round 1 of the roadmap is generally reserved for common factors that may directly cause ME/CFS, or are strongly associated with triggering ME/CFS. So for example, parvovirus B19 and Chlamydia pneumoniae are in round 1, because they are actual known causes of ME/CFS. And there's a strong association and lots of anecdotal evidence that coxsackievirus B or echovirus may trigger ME/CFS. Same for Epstein-Barr virus.

Sinusitis does not have that causal status; it cannot cause ME/CFS. One study I found said it could cause chronic fatigue (as can a UTI), but not ME/CFS. As we know, ME/CFS is much more than just fatigue.

So I think sinusitis is best placed in the common comorbidities of ME/CFS.

 

[Aerose91]

The talk by Professor Hugh Perry at the Action for me symposium for people with severe M.E in London yesterday was about exactly the things discussed above - peripheral infections in the body (bacterial or viral or possibly other prolonged stressors) causing neuro-inflammation (activated microglia) causing sickness behaviour. He says research shows this happening in M.S. Then the microglia in the brain become 'primed' so that they are bigger than normal and more of them and they become supersensitive to triggers causing even more neuro-inflammation and more severe and prolonged sickness behaviour (he also talked about cytokines)

The see this in lots of neurodegenerative diseases. He mentioned LPS and a lot of it was over my head but I know LPS has something to do with gram negative bacteria such as Lyme and Bart that I am struggling with. KDM seemed to be on the case with this.

Professor Perry mentioned the Japanese study, but unfortunately he got hung up on stress as being a cause of activated Microglia for some people (only shown in Mice) and then said that exercise would help (he wasn't talking about for PWME - severe, but he didn't seem to be aware of the nature of severe M.E).

He was asked if they were working on anything to reverse the inflammation by reducing the amount and size of microglia or by reducing their sensitivity once they had been primed, but he said this was not something being looked at, which seemed strange to me.

I would have thought if we extrapolate this out to PWME then we find a lot have Lyme etc and for these people treating the peripheral infections should help the brain to recover... although interestingly the point is that the microglia stay activated even after infection is cleared and once primed they are always going to overreact.

This makes a kind of sense if I think about my own situation because every time I have another illness on top of the M.E my symptoms get worse and barely ever recover back to the point I was at before. It was measles then pneumonia then pleurisy in 2008 that caused my crash down from a mild remission to severe. So if my microglia are already primed, this could cause inflammation in the brain by the over reactive microglia and cause a prolonged and excessive sickness response.

One of the doctors I saw in the past described mycroglia activation to me as trying to stop a speeding locomotive with no brakes- that unless something is introduced to reduce the inflammation they will stay activated forever. He said this is a drastic difference between brain and body inflammation, that brain will remain forever if not treated correctly

 

[Hip]

One of the doctors I saw in the past described mycroglia activation to me as trying to stop a speeding locomotive with no brakes- that unless something is introduced to reduce the inflammation they will stay activated forever. He said this is a drastic difference between brain and body inflammation, that brain will remain forever if not treated correctly

I wonder therefore if taking microglial activation inhibitors such as N-acetyl-glucosamine and turmeric for a year or two might eventually pay dividends for you. I know you said you noticed no short term benefits from these two supplements, but it takes a long time to put out the fire of chronic microglial activation. COX-2 inhibitors such as propolis 4000 mg daily also reduce microglial activation. LDN also reduces it. I have a list of microglial activation inhibitors if you are interested.



One important thing is that there are actually two types of microglial activation:

Classical microglial activation which is neuro-destructive (and involves COX-2, iNOS, IL-6, and TNF-alpha).

Alternative microglial activation which is neuro-protective (and involves FIZZ-1, YM-1, Arginase-1, and IL-4).

Classical microglial activation is the "kill" mode which destroys pathogens in the brain; alternative microglial activation is the "repair" mode which heals the brain.

When we talk about microglial activation and is destructive effects, we are talking about classical microglial activation. I was trying to find ways to alter the type of activation from classical to alternative, but did not come across anything definitive.

However, oxidative stress and lack of Nrf2 may favor the neuro-destructive classical mode of microglial activation over the neuro-protective alternative mode. See this study:

Nrf2 regulates microglial dynamics and neuroinflammation in experimental Parkinson's disease

So taking Nrf2-activators may help flip to the neuro-protective alternative microglial activation mode. Genistein activates Nrf2, and there are Nrf2-activator supplements like this one: XYMOGEN Nrf2-activator.

 

[Aerose91]

I wonder therefore if taking microglial activation inhibitors such as N-acetyl-glucosamine and turmeric for a year or two might eventually pay dividends for you. I know you said you noticed no short term benefits from these two supplements, but it takes a long time to put out the fire of chronic microglial activation. COX-2 inhibitors such as propolis 4000 mg daily also reduce microglial activation. LDN also reduces it. I have a list of microglial activation inhibitors if you are interested.



One important thing is that there are actually two types of microglial activation:

Classical microglial activation which is neuro-destructive (and involves COX-2, iNOS, IL-6, and TNF-alpha).

Alternative microglial activation which is neuro-protective (and involves FIZZ-1, YM-1, Arginase-1, and IL-4).

Classical microglial activation is the "kill" mode which destroys pathogens in the brain; alternative microglial activation is the "repair" mode which heals the brain.

When we talk about microglial activation and is destructive effects, we are talking about classical microglial activation. I was trying to find ways to alter the type of activation from classical to alternative, but did not come across anything definitive.

However, oxidative stress and lack of Nrf2 may favor the neuro-destructive classical mode of microglial activation over the neuro-protective alternative mode. See this study:

Nrf2 regulates microglial dynamics and neuroinflammation in experimental Parkinson's disease

So taking Nrf2-activators may help flip to the neuro-protective alternative microglial activation mode. Genistein activates Nrf2, and there are Nrf2-activator supplements like this one: XYMOGEN Nrf2-activator.

Thanks hip I really appreciate that.

I was on LDN as well as curcumin for over a year and continued declining. However, I was told that I needed at least 1200 mg/day of curcumin and it was just too expensive for me to take that much. I feel like if the disease process is still in effect these things would only be bailing water from a leaky boat that still has a hole. I just can't afford the bail, I need to patch the hole. Lately I've gotten off everything and have seen no change in symptoms being on or off everything.

 

[silverseas2014]

Hello. I definitely see links between ME/CFS and mental issues: largely depression and anxiety. After years of trying different antidepressants, stimulants, etc., I recently started a trial of Lithium Orotate (a la Yasko)---please note that this is NOT a prescription drug which has many negative side-effects, rather it is an OTC (over-the-counter) supplement in relatively tiny albeit effective doses. I have had remarkable improvement in mood--I wake up feeling cheery---and I spend the day cheerful; I do not flow up and down, in and out---my mood is steady throughout the day. I don't fly of the handle--I can actually remain calm and thoughtful. Additionally, Lithium Orotate has diminished (dare I say vanquished) the adrenaline surges/racy heart feeling that I have had most of my life.

I have tried two brands: Swanson Lithium Orotate (5 mg Elemental Lithium in a 131 mg. capsule); and Advanced
Research Lithium Orotate (4.6 mg Elemental Lithium in a 120 mg. tablet). Swanson is available at Swanson.com and Advanced Research is available on Amazon.

My dose: I stick with a low dose advocated by Yasko. I break a Swanson capsule and take a one-third of it (so a very tiny dose)---I take a third of a capsule three times a day. I use the Advanced Research occasionally taking a quarter of a tablet three times a day.

Lithium Orotate initially made me quite sleepy (yes, even at this tiny dose), but I understand that this is an indication that you might need it, and the sleepy effects wear off--and indeed, this has been the case with me.

There is a thread here at Phoenixrising about people who have tried Lithium Orotate: http://forums.phoenixrising.me/index.php?threads/lithium-experiences.11208/

I hope this is helpful,
Silverseas2014

 

[silverseas2014]

I forgot to add that there is a relationship between lithium and vitamin b12: Reference needed, " Yasko affirms that those with SHMT and/or MTR/MTRR mutations tend to excrete a lot of lithium in urine tests. That's why she recommends it to these people. And anyone with a great need for B12 according to their SNPs should be on a low dose lithium because it helps B12 [and folate, I believe] to be transported to the blood cells."

So, for me, the addition of Lithium Orotate to my Methylation Protocol is a smooth feeling--I have good energy without the rough, jagged, jolting energy of a stimulant like coffee, sudafed, adderall. I must state that I take a good deal of Methyl B12 (my body seems to crave it) as well as Methylfolate. I am hopeful that Yasko is right and that the Lithium Orotate is funneling all this badly needed Methyl B12 and Methylfolate into my cells where it can do it's stuff.

Cheers,
Silverseas2014

 

[Aerose91]

@silverseas2014

I've been hearing a lot about lithium lately and have heard some good stories about it. Isn't lithium what they give to severely depressed people in the hospital? You said the over the counter stuff is different but I still don't know enough to try it. I am completely intolerant to methyl b12 tho and am taking very low doses of hydroxyl b12 which seems to be ok

 

[Martial]

@silverseas2014

I've been hearing a lot about lithium lately and have heard some good stories about it. Isn't lithium what they give to severely depressed people in the hospital? You said the over the counter stuff is different but I still don't know enough to try it. I am completely intolerant to methyl b12 tho and am taking very low doses of hydroxyl b12 which seems to be ok

It's a lot lower doses and a different compound that is binded with the lithium then prescription lithium given for bi polar disorder or suicidal depressed people. It may have its own share of small risks though so important to look into that and watch for any reactions.

 

[taniaaust1]

Hey @JAM. Glad to hear that you're doing a little bit better.

PTSD is one of my theories too and I'm interested to hear that a proper mental health professional lends it some validity. I had heard that the definition to qualify for it is traditionally pretty strict, and that illness doesn't suffice (ie you have to be in some kind of awful combat situation), but like everything in medicine, I think there are brushstrokes rather than just black and white. (@Sidereal might know something about this as I believe she has some expertise in this area).

Funnily enough, I got really into Homeland right after my illness began, and it's only in retrospect that I made the connection between its onset and something like PTSD. Our bodies go haywire, which is stressful enough, then the people we expect to help in that situation treat us with indifference or often contempt (doctors), and then finally our family and friends do the same! We then often suffer from hypochondriac-level hyper-vigilance of our symptoms, which seems an awful lot like PTSD people having paranoid and flashbacks and only, of course, convinces doctors further that we are, in fact, crazy.

It's the ultimate formula for severe stress and depression if you ask me!

Anyway, I'm glad again that you're doing better and hope that your recovery continues.

Im sure many of us are getting PTSD from our experience of this illness, many of us have gone throu periods where we believe this illness is going to kill us or our doctors are by ignoring the severe illness we have but unfortunately the medical profession seems to not recognise the actual trauma this illness and others due to their views of it are putting us throu.

I think that PTSD is part of my current issue.. PTSD due to experiences around ME.

Being in horrible constant situations certainly can cause depression or anxiety esp for those who cant live any kind of anywhere normal kind of life.

I developed an eatting disorder at one point due to ME, (some would of called it anorexia) as my life was so very out of control due to the ME, I started control my food and eatting and putting more and more control onto that, to gain a sense of that "something" in my life was in control.

Interesting after a time of bad food habits due to having to have something to control to make me feel more secure, the body image issues then did start to come in later where i truely wanted to be thinner..or maybe when one starts hanging around anorexia websites, you start to take on the thoughts of others. I dont know what happened but there was a shift with me.. the whole issue started out thou with needing some control in my life due to the horrific out of control ME situation.. (thank God Ive got over that issue but Im still being a little obsessive about other things due to this lack of any kind of stability in my life, not to the point of OCD but almost at times).

Im also sure that ME caused my PMS to change to PMDD (premenstral dysphoic disorder). So obviously it did something bad to my hormones.

Then there was the emotional/mental reactions I started to get to foods my body was reacting very badly too.. wrong foods started giving me severe mood swings. I think that was caused by a combo of having PCOS which affected my insulin and maybe with my MCS, maybe Im far more sensitive to abnormally very high insulin levels. So maybe ME was involved some in that too.

Dealing with ME (maybe due to the experiences with others around it) has majorly affected my personality. Im now not trusting of others, critical of others and not easy going like I used to be. It's like changed the person I am.

So yes I do think ME can cause or initiate mental illnesses.

 

[Aerose91]

It's a lot lower doses and a different compound that is binded with the lithium then prescription lithium given for bi polar disorder or suicidal depressed people. It may have its own share of small risks though so important to look into that and watch for any reactions.

Is this something that can be tested in a lab test or is it trial and error type thing. Seems like something to tread carefully with

 

[taniaaust1]

I certainly agree with what you are saying, @CFS_for_19_years, and in fact I just recently posted here about my experiences with a chronic recurring kidney / urinary tract infection (UTI) greatly increasing my ME/CFS fatigue levels on the days in which this infection flared up.

In fact originally I placed chronic UTIs in the roadmap as a possible factor that might be present in ME/CFS patients, and which might worsen ME/CFS symptoms. But I later removed this, because I could not find any evidence of UTIs being more common in ME/CFS. Though UTIs are well-known to cause fatigue even in the general population.

At present the roadmap contains a section on sinusitis (sinus infection / inflammation) as an exacerbating factor in ME/CFS, and also a section on hidden jaw bone infections being a causal or exacerbating factor of ME/CFS.

You are right that the sinusitis could probably be moved up higher in the roadmap, perhaps placed in round 2, which lists the common comorbidities of ME/CFS. Jaw bone infections I believe are rare, so that's best left in round 4 I think (the 4th round lists the rarer ME/CFS causal or contributory factors).

The roadmap also currently lacks a section on the various causes and appropriate treatments of sinusitis in ME/CFS patients. Just writing such a sinusitis treatment section would be weeks of research and work (everything goes slowly when you brain fog).


What I would like to know is what other type of chronic or recurring infections might be common in ME/CFS patients, which may worsen the ME/CFS symptoms. And what places in the body can host such infections.

Maybe things like Staph and Strep. I had both going on chronically, issue is treating them didnt help my ME any but I think it was worth trying anyway. I had Strep B (vaginally) and the Staph kept happening in various places in my body eg I had it in an inflamed patch of my leg for maybe a year, I also had it in my nose.

One study done by the CFS researchers at Newcastle, Australia, showed that unlike normals who also commonly carry nasal staph (25%?), the staph the CFS patients had there tended to be a toxin producing kind of staph in their nose. So you may want to include that.