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CDC: CFS not subject to opportunistic infections?!

Jonathan Edwards

"Gibberish"
Messages
5,256
... what mechanism would be at play in the group of us who do catch everything going and then can't clear things quickly like our healthy family members do.

We also seem to have a preponderance of stomach bugs, and upper and lower respiratory tract infections as the main problems. I have had one after the other without a break since early June this year and it has severely affected my overall functioning and caused a serious decline in my M.E. I now almost completely rely on a wheelchair for getting out and about and once again even conversations can be exhausting.

I understand that we do not en masse have testable, normal immune dysfunction, as observed by Fluge and Mella in your conversations with them. In this case could you try to imagine what could logically cause this state of affairs?

My colleagues and I are putting a lot of thought into just this. Maybe one could also ask why is it that Manchester United tend win at football when they have exactly the same number of team members as other teams, yet even so, over the years their success goes up and down?

It seems that the immune system has certain fairly fixed rules about how many B and T cells it can find space for. These numbers do vary from person to person but probably not enough to matter much most of the time. What matters is the combination of very specific skills belonging to each cell and the ability of the cells to 'pass the ball on' to players further up the field in a co-ordinated strategy that fools the enemy. Things like viral antibody titres or ANA can tell us about specific skills in a very crude way but we have absolutely no way to measure the team strategy. And it is likely the team strategy will be constantly evolving partly as old players retire and new ones appear and partly because old players become the team selection panel - some very good at that and some not.

I will stick to B cells because T cell populations are probably much more stable after adolescence. B cell populations are constantly being replaced. So, what do I mean by cells 'passing the ball on'? Each B cell makes a unique shape of antibody. That antibody can bind to a wide range of antigens or it can be specific for just one. It can bind strongly or weakly. For any microbe protein antigen there may be twenty main surface patches or 'epitopes' that an antibody can bind to. The antibody can bind to its epitope from left side or right side, sometimes getting in the way of another antibody binding and sometimes not ... The possibilities go on for ever and I haven't even mentioned the four classes of secreted antibody, the four IgG subclasses and the variants in framework region that can have extra binding sites on them.

When an antibody binds to antigen it always tends to generate both an amplification signal and a turn off signal. Antibody bound to antigen can amplify further antibody production by ticking up other B cells that recognise an epitope on the other side of the antigen. But if all the antigen epitopes are covered in antibody it becomes invisible and the system is turned off. Turning on and off also depends on whether antibody clumps antigen molecules together in pairs or large groups - which also feeds in to whether you get inflammation.

It seems that, quite remarkably, the B cell system has rules that make sure we usually end up with a 'sensible mixture' of antibodies with all skills - some solid defenders that recognise all comers, some mid field players to link up and some strikers who can hit a precise point in goal from any distance. But one can imagine that it would be likely that the team make up would gradually shift with time. The more infections we see the more highly specific antibodies we are likely to make. We might end up with a team full of strikers. Blood tests would show nothing different. We would be very good at not getting a second dose of a strain of 'flu' but might have no defence against Ebola.

I suspect that all of us do see an evolution in our antibody responses in adulthood. There are also evolutions in antibody responses in whole populations. Native South American populations have no experience of flu and so often die if infected as adults. I have only once had a cold with a really blocked up gummy nose in the last twenty years. I have had quite a few sneezings and sore throats and sinus pains but not a gummy nose. I have a theory about this, which is that the traditional gummy nose cold was actually caused by cloth handkerchiefs spreading viruses that made gummy noses that were blown on to handkerchiefs and pulled out of pockets all day long and infected ... Now that we use tissues viruses that cause gummy noses have a much harder time.

So the basic idea is that the exact make-up of antibodies with specific skills in our bodies is probably always changing and it might not be surprising if for a period of years (long lived plasma cells making antibody last up to about ten years) the selection panel might shift the balance one way or another. Moreover, because the ball passing needed is so complicated it would not be that surprising if a team got stuck in a bad strategy like overdoing the cytokine response to every little virus that turns up. Some great football teams of the past have sunk down the rankings and got stuck there apparently simply because of selection panel strategies.

And none of this would show up at all on standard tests.

So how the heck could one test such an idea? The hope is that we can get a clue from looking at detailed features of what look like perfectly ordinary antibodies. One interesting thing is that in a number of autoimmune diseases antibodies are often made using a framework template that normal people have but virtually never use. Its a bit like trying to find out the political affiliations of a terrorist group not by looking at who they are shooting at but by looking for the manufacturer's name on the rifles.
 

NK17

Senior Member
Messages
592
Hi,
I was just laying in bed this morning, as you do, worrying about various things when my mind wandered to this discussion and what it wondered was whether @Jonathan Edwards might be able to say if he can see what mechanism would be at play in the group of us who do catch everything going and then can't clear things quickly like our healthy family members do.

There is a large group of us around who have this problem of, lets say, common everyday infections/illnesses being more frequent, severe and prolonged than they are in the people around us. I know this is anecdotal, but I have met many patients with this profile.

We also seem to have a preponderance of stomach bugs, and upper and lower respiratory tract infections as the main problems. I have had one after the other without a break since early June this year and it has severely affected my overall functioning and caused a serious decline in my M.E. I now almost completely rely on a wheelchair for getting out and about and once again even conversations can be exhausting.

I understand that we do not en masse have testable, normal immune dysfunction, as observed by Fluge and Mella in your conversations with them. In this case could you try to imagine what could logically cause this state of affairs?

All the best
Justy.
Justy what you say really resonate with me.
I have a long history of catching "everything" that goes around since my early childhood.
Not only did I have a delicate immunological constitution, but recovery after each infection/illness has always been slow.
My ME was precipitated by infectious mononucleosis at age 14, but all through childhood I suffered and had clear manifestations of glandular fever with typical high temperatures, swollen lymphnodes (once as big as an hard boiled egg), enlarged liver, high liver functions, malaise etc etc etc
This is just a partial list in chronological order:
- impetigo 18 months
- atypical pneumonia 2 years old (caught when I already had scars in my lungs, by mom who against a pediatrician's opinion took me to the ER, where after chest x-ray doctors told her that if she waited another 48 hours I would have probably been dead)
- rheumatic fever and subsequent tonsillectomy and adenectomy (which I suspect was a very popular procedure back then, I have the impression that we don't routinely do tonsillectomies nowadays as frequently as back in the old days, probably because we've a larger and more selective choice of antibiotics and partially because we probably know better than to cut out some organs which have a role at guarding our respiratory system, but I might be wrong)
- a glorious case of measles at 5 year old
- glandular fever attacks, all through elementary school
- scarlet fever at 10
- frequent strep throat and herpangina that would make me homebound for days (still get them now as an adult)
- infectious mono at 14
- toxoplasmosis (super high antibodies titers which prompted several months long antibiotic treatment) at 15
- chickenpox/varicella zoster at 16
- a nasty enteroviral infection which almost killed me, caught while I was vacationing on the island of Malta at age 17
As a child and young teenager I was lucky enough to be followed and cared for by an infectious disease specialist. But although he tried his best to take good care of me, he didn't stress enough how rest was crucial for me, nor did he see the larger picture. My mom took extra care of me, still life had to go on and I was and still am somebody who is I high achiever and who doesn't complain about pain and discomfort easily. I also rarely looked sick, even when at my worst. But that is drastically changing now that I'm in full ME flare up mode.
Looking back on my medical history I now wonder if I might have been a candidate for IVIG, there is no doubt in my mind that every single common infection and subsequent illness, was handled quite poorly by my immune system and IVIG might have boosted and helped resurrect a faulty response and consequently abated the level and accumulation of inflammation and damage.
I also suffered from:
- frequent bronchitis all through my early thirties with a serious case while I was pregnant
Etc etc etc
Flash forward 30 years I finally get diagnosed by 3 ME doctors, still my health is rapidly deteriorating and I'm really trying to see what can be done about it, since so far all interventions have not worked.
Just like you I am now homebound and have to use, be pushed on, a wheelchair.
 
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NK17

Senior Member
Messages
592
@Jonathan Edwards are we in the typical scenario where "not all that counts can be counted and not all that can be counted counts"?
I'm confident that you and your colleagues are working hard to get us some markers, some actual quantitative measurements.
Please keep up your good work, too many of us are tired of suffering, physically suffering, adults and children alike.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thank you @Jonathan Edwards for you response, and for using an analogy that I can understand. I'm really glad to see that this side of things is being looked at and talked about as I often feel that if I could at least get some respite from the constant illnesses on top of the M.E then I might be able to slowly improve my functioning.

@NK17 so sorry to hear of all you have been through - we have a remarkably similar history. I have also had adenoids and tonsils removed - at about age 10 after two cases of quinsy.
I had measles at age 37, have had pneumonia three times, glandular fever severe at 13, numerous chest and lung infections since a child up to the present day.

At one point, when I was about 14, my mum took me yet again to the Drs and asked him, 'what can we do, she is ill again' and he looked at my notes and laughingly said 'well if she was a horse we would shoot her' ?? In fact nobody did anything except give me tons of antibiotics and many many chest x rays (had another one last week and have now just given up about radiation risk) which doctor after doctor shook their heads over - and they still do!
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Hello,
As mentioned in another post (re: Dr. Wessely), I am new to this forum and have been "out of the loop" for a while until recently. My disease (CFIDS) was at least 90% in remission from 1997 until spring of 2013. I have discussed this in my blog, My Battle with CFIDS. My question is this: I was very surprised to learn that according to the CDC: " The opportunistic infections or increased risk for cancer observed in persons with immunodeficiency diseases or in immunosuppressed individuals is also not observed in CFS." ?! I find this very hard to believe, as I have struggled with chronic infections and this was, in fact, a big part of what led to my diagnosis of CFIDS in 1992! ?

I tend to catch everything going around and take longer to get over it, but this is not the same experience, as say, someone with AIDS, who gets very very ill from common infections. There is a difference between immune dysfunction and immunodeficiency.

My personal hypothesis of why some claim they get less infections is simply because they are exposed less (mostly housebound), though people on this forum have suggested otherwise...

There has been noted increased risk of one type of cancer, specifically non-Hodgkins lymphoma. The implication of this are unknown, but it suggests that some people do indeed have immunological issues associated with their fatigue.

First hypothesized here:
http://www.ncbi.nlm.nih.gov/pubmed/1394166
Finally examined in a large epidemiological study here:
http://www.ncbi.nlm.nih.gov/pubmed/22648858
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Yes, it is possible that many housebound adults are not as open to catching things due to lack of contact with others. I, on the other hand, have two children still at home who go to two different schools. My husband also works in two different schools with young people as a counsellor and teaches in another setting once a week.

So that exposes me indirectly to 5 heavily populated environments. My husband says that so many times the youngsters he works with come in and cough and sneeze all over him, and tell him that they are really ill, but wanted to come in and see him...Thanks a lot!!
 

lansbergen

Senior Member
Messages
2,512
I have had quite a few sneezings and sore throats and sinus pains but not a gummy nose.

My mucosa was very dry but a while ago it started producing mucus again. First very thick but now more fluent and I even get runny nose. I also sneeze a lot and have intense itching that drives me crazy sometimes.. It is part of my improvement. Nothing to do with getting infections but the immune system better capable to fight the chronic infection.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
At one point, when I was about 14, my mum took me yet again to the Drs and asked him, 'what can we do, she is ill again' and he looked at my notes and laughingly said 'well if she was a horse we would shoot her' ??
(My bolding)

I was told something similar once. It was something along the lines of "You know what would happen to you if you were a horse?" or "You know what happens to horses like that?".

It can take me many months to get over a simple flu. Indeed, a year and a half after getting one while in hospital I have not got rid of all the symptoms. This is almost certainly not directly due to a virus, but it shows persistent post-viral issues. These are most likely immunological. I am aware of other possibilities though, but there is just as little research on alternatives as there is on post-viral immune changes.
 

NK17

Senior Member
Messages
592
@alex3619 and @justy we've heard all sorts of terrible and insensitive things, haven't we?
Some doctors are just horrible people who happened to become doctors, like there are bad people who teach. You would think that certain professions would attract only good people, alas bad apples are everywhere.
Luckily there are a few good ones out there willing to fight for us.
I think that this quote from Seabiscuit is quite appropriate to our particular case: "You don't throw a whole life away just 'cause he's banged up a little." by Laura Hillenbrand longtime ME sufferer.
:hug:
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
I think one of the hallmarks ME is a chronic overactive immune system which is where many of the crappy symptoms come from. Other parts of the immune system seem depressed but that seems to be for other reasons, such as toxicity and cellular damage. I guess an overactive immune system can't be considered suppressed even though it generally works sub-par.

I disagree. I think people confuse pain symptoms, lack of fever/headcolds and assume high immunity. Low immunity explains the symptoms better, especially when you add in the fact that Epstein Barr virus blocks immunity on multiple levels.
 
Messages
17
Again, I realize this is "anecdotal" but it (my own experience) is all I've got:

I caught strep throat from an asymptomatic carrier who had been fully treated with antibiotics. Per the CDC, this is NOT supposed to be possible unless you have a weakened immune system. "Immunocompromised," "deficiency," "dysfunction," call it whatever you like, the end result is the same: you catch things to an extent that "normal" people don't.

And as Justy has described, since CFIDS I too catch everything going around - the opposite of my premorbid state! - and what would be a trivial, mild, short-lived illness for a "normal" person I get much more severe and longer lasting.

"Opportunistic" does not just mean "unusual and often fatal infections that people with AIDS get" (although it includes those) nor is it limited to a list of specific organisms. Any common organism can be "opportunistic" by taking advantage of a weakened immune system that allows it to flourish where a normal immune system would easily fight it off. A classic example of this is candida, which exists in normal people without causing symptoms.

I recently retired from working in mainstream medicine for 22 years so I am pretty confident in my understanding of this. However, I'm not here to argue definitions.

My point was that the CDC does not appear to acknowledge, or even want to investigate, WHATEVER YOU WANT TO CALL IT that is making some patients with ME/CFS, like Justy and me, suffer from chronic, severe and protracted infections from ordinary contagions that cause little or no symptoms in healthy people! You don't need to measure levels of immunoglobulins or other markers to recognize that something is obviously and seriously wrong when a person has chronic and severe debility from common pathogens.

To quibble over definitions is one thing. To completely IGNORE the situation as the CDC seems to be doing, is another. Perhaps (and I'm just wildly hypothesizing here) the motivation is related to lack of funding and the fact that if they recognize patients are getting chronic infections, then they will have to acknowledge a physical etiology of ME/CFS which demands investigation.

I'm done here - keeping up with this thread is wearing me out. Many thanks to everyone who has contributed!
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
A friend of mine was a sickly child. I met her in 1972, in college. She died in the late 1980s of anticardiolipin syndrome, which is an autoimmune disorder that most people have never heard of and was probably defined shortly before she died. So reading about people who "catch everything" makes me wonder if they have an underlying but undiagnosed autoimmune disorder.
 

justy

Donate Advocate Demonstrate
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5,524
Location
U.K
A friend of mine was a sickly child. I met her in 1972, in college. She died in the late 1980s of anticardiolipin syndrome, which is an autoimmune disorder that most people have never heard of and was probably defined shortly before she died. So reading about people who "catch everything" makes me wonder if they have an underlying but undiagnosed autoimmune disorder.

Hi Irene, I also now have low anti nuclear antibody titres, so will be paying to see a private rheumatologist next week to make sure this has been ruled out (or in) for me.
 

Aerose91

Senior Member
Messages
1,400
I disagree. I think people confuse pain symptoms, lack of fever/headcolds and assume high immunity. Low immunity explains the symptoms better, especially when you add in the fact that Epstein Barr virus blocks immunity on multiple levels.

Your immune system is being ineffective, yes, but that doesn't mean it isn't in overdrive trying to get things under control. My tests have always come back with very activated immune markers but also signs of low immunity. It seems that our immune systems are working overtime but being ineffective. Its like revving a car engine in neutral hoping it will go somewhere.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
metalnun,

I completely agree with your comment about the CDC. About a year ago I took a break from my integrative MD and had a consult with a seemingly friendly infectious disease resident at a university medical center. I have a degree as a chiropractor and have worked in pharmaceutical research so I have above average ability to locate and assimilate scientific literature.

Anyway, while he was ruling out rare, weird infections (brucellosis etc) I brought him a copy of the research article "Staying Alive" on intracellular infections. It detailed how certain organisms go L-form, dropping their cell walls, to infect intracellularly and persist by blocking apoptosis. Despite this having been published he was not aware of it and he dismissed every study cited therein by saying he didn't believe in it as a disease possibility! Talk about stubborn.

So the prevailing attitude is to make MDs button pushers and if something isn't in their textbook it can't exist. If patients have something you can't explain just take them out back, shoot them and bring in the next one. It reminds me of Sweeney Todd, The Barber of Fleet Street.

MJS_stincol24__04_wood_stincol24.jpg


Full musical with Angela Lansbury!

By the way, we aren't the only ones criticizing the CDC. A MD recently went to an airport in a HAZMET suit to protest the CDC misinformation regarding the ebola epidemic in Africa.


“When […] a million people are in quarantine in West Africa right now, and 10,000 people leave West Africa a day, it’s just a matter of time before this gets to every third-world country, and it’s going to devour them,” he said. Then, Mobley said, imported cases could happen weekly, daily or even hourly.

“There’s no advanced nation in the world that can handle that many clusters,” he said.
‘CDC Is Lying’: Doc Wears Hazmat Suit to Airport to Protest Handling of Ebola Threat.

The CDC has a long history of misinformation. See Osler's Web by Hillary Johnson.
 

Hip

Senior Member
Messages
17,824
metAnyway, while he was ruling out rare, weird infections (brucellosis etc) I brought him a copy of the research article "Staying Alive" on intracellular infections. It detailed how certain organisms go L-form, dropping their cell walls, to infect intracellularly and persist by blocking apoptosis. Despite this having been published he was not aware of it and he dismissed every study cited therein by saying he didn't believe in it as a disease possibility! Talk about stubborn.

Evidence that L-form bacteria cause disease is contradictory and controversial, so this is an area that lacks solid proof.

I think the study of a possible causal connection between L-form bacteria and disease is very interesting, but it does require more research to prove L-forms can cause disease, if indeed they can.

G.J. Domingue has done some excellent work studying links between L-forms and various diseases.