Do MEs cause CFS?

[Valentijn]

Ah but somebody thinks they have identified the commensal bacterium in cats that might get passed on the pillowcase to the child. Trouble is I cannot remember its name.

Maybe Bartonella, also known as Cat Scratch Fever/Disease? It can cause a lot of systemic issues.

 

[wastwater]

The way I was thinking about ME/cfs,although all this maybe incorrect and not even remotely correct but here goes.If B cells fill up with EBV and T cells keep them in control the cytokines are like the whipping master getting the T cells to work and everything is working,its just you have high levels of cytokine signalling.If you wallop those b cells with rituximab then the t cells wont need as much signalling(cytokines) to keep things under control so you will feel better.The cluster outbreaks had something effect t cell function(my guess) and things like EBV popped out of latency the cytokine signalling was ramped up they went back in latency but people felt ill due to extra cytokine signalling.What affects t cells like that

 

[Leopardtail]

I think it's more to do with out being able to answer anything opposing anything to do with B cells. Still waiting for a reply from the experts on how treating ebv in MS has helped and also how T cells which are said to be Unimport in immune/autoimmune diseases. Also how infections have nothing to do with autoimmune illnesses even though research has been quoted several times.

Also still 30 yrs of research that all of the sudden doesn't matter.

Aussies are use to the poms coming second but probably third. Might help if they look into research done by the Americans(klimas/peterson/chia and co) and the Aussies at Griffith university.


I was under the impression that scientists had good lateral thinking but it seems once they are onto a theory it doesn't matter.

Smiles, sadly not, science needs more artists / writers asking questions to encourage lateral thinking. Or perhaps a few four years old asking but Daddy why does this happen???? Sometimes innocence asks the right questions!

I suspect the primary issues with ME are the multi-system nature of the illness. Medical science works in 'pigeon holes' related to systems. Any lateral thinking tends to be into and out of that pigeon hole, rather than thinking across three or more systems. I do agree that the research in Australia has for the most part been more balanced, and often more thorough. The primary issue in Britain has been access to funding, there are some great scientists who just cannot get through the politics to access the funding.

There is also a lack of funding at PhD level, so we are not getting scientists who make ME their primary focus, this tends to mean they come at the problem with a particular focus rooted in their previous experience. It tends to mean their focus is 'immunology of ME' or 'psychology of ME' , 'neurology of ME'. Personally I would like to see issue focus such as 'cognition in ME' with teams understanding neurology, psychology, circulation and biochemistry taking a 360 degree view of the issue. Obviously other issues might demand different mixes of skills.

 

[heapsreal]

Smiles, sadly not, science needs more artists / writers asking questions to encourage lateral thinking. Or perhaps a few four years old asking but Daddy why does this happen???? Sometimes innocence asks the right questions!

I suspect the primary issues with ME are the multi-system nature of the illness. Medical science works in 'pigeon holes' related to systems. Any lateral thinking tends to be into and out of that pigeon hole, rather than thinking across three or more systems. I do agree that the research in Australia has for the most part been more balanced, and often more thorough. The primary issue in Britain has been access to funding, there are some great scientists who just cannot get through the politics to access the funding.

There is also a lack of funding at PhD level, so we are not getting scientists who make ME their primary focus, this tends to mean they come at the problem with a particular focus rooted in their previous experience. It tends to mean their focus is 'immunology of ME' or 'psychology of ME' , 'neurology of ME'. Personally I would like to see issue focus such as 'cognition in ME' with teams understanding neurology, psychology, circulation and biochemistry taking a 360 degree view of the issue. Obviously other issues might demand different mixes of skills.

I guess it's an issue with specialist in that they can only see their specialty. This might be why most cfs/me patients have had more success treating them by gp's then specialists.

But a few specialists who themselves or close relatives who have had this illness seem to have a good understanding such as Dr Lerner and Dr chia? ? Both immunologists

Either way more research and understanding is required? ?

 

[Gemini]

do you think that many autoimmune conditions involve a proliferation of b-cells due to b-cells creating antibodies to themselves, or would that be an unusual scenario?

A case of the immune system attacking one of its own components:

IgA autoantibodies. 20-40% of people with Selective IgA Deficiency (low to undetectable levels of IgA) have IgG antibodies to IgA. Recognized in Transfusion Medicine IgA autoantibodies can cause a severe anaphylactic reaction to a blood transfusion. Red Cross screens patients for IgA autoantibodies and its Rare Blood Program provides blood depleted of IgA for such patients. Also manufacturers of IVIG offer special products containing low levels of IgA for patients with autoantibodies.

There is no treatment for IgA deficiency.

Autoimmunity published an interesting paper in 2010 "Cross-reactive antibodies induced by xenogeneic IgA can
cause selective IgA deficiency" documenting exogenous sources of IgA that may trigger human IgA autoantibodies:
http://www.ncbi.nlm.nih.gov/pubmed/?term=19824874

Some researchers have speculated polyclonal hypergammaglobulinemia in IgA deficiency was the immune system protectively "compensating" for loss of its IgA component. Don't know if that hypothesis was ever proved.

 

[Marco]

@Jonathan Edwards (when you decompress)

I'm sure you've come across the discussions here (this thread I think but can't remember) where some PWME appear to pick up multiple bugs while others report apparently no or few colds/flus etc over a period of many years. I fall into the latter group and can count the number of 'bugs' on one hand over a nearly 30 year period. One way I've rationalised this is that the immune system may already be activated and producing the symptoms of 'sickness behaviour' so any new infection may be present (and dealt with) but goes unnoticed.

BUT. It just occurred to me that I experience something else which would contradict this theory. Over he same period of time I appear to have developed an enhanced reaction to insect bites. We have cats so fleas can be a problem but our local specialities are also mossies and autat (chigs/chats). I tend to have pretty severe swelling and a real 'sickness behaviour'/malaise response than can last may days up to a week in complete contrast to the lack of response to colds/flus that I must have been exposed to (having been working full time for 20 of the last 30 years).

Mossies (obviously) can carry viruses and presumably also bacterial infections so you would expect the same immune pathways to be triggered by colds/flus and bites although I believe that mossie bites (and perhaps those of other bloodsuckers) alter the victim's immune response to aid feeding. Perhaps also (and here I admit my ignorance) insect bites might trigger some allergy type immune pathway?

Whatever, I find a very distinct qualitative difference between my response to the two immune challenges. I've no idea if this is common in PWME and can't say what; if anything, it means?

 

[MeSci]

@Jonathan Edwards (when you decompress)

I'm sure you've come across the discussions here (this thread I think but can't remember) where some PWME appear to pick up multiple bugs while others report apparently no or few colds/flus etc over a period of many years. I fall into the latter group and can count the number of 'bugs' on one hand over a nearly 30 year period. One way I've rationalised this is that the immune system may already be activated and producing the symptoms of 'sickness behaviour' so any new infection may be present (and dealt with) but goes unnoticed.

BUT. It just occurred to me that I experience something else which would contradict this theory. Over he same period of time I appear to have developed an enhanced reaction to insect bites. We have cats so fleas can be a problem but our local specialities are also mossies and autat (chigs/chats). I tend to have pretty severe swelling and a real 'sickness behaviour'/malaise response than can last may days up to a week in complete contrast to the lack of response to colds/flus that I must have been exposed to (having been working full time for 20 of the last 30 years).

Mossies (obviously) can carry viruses and presumably also bacterial infections so you would expect the same immune pathways to be triggered by colds/flus and bites although I believe that mossie bites (and perhaps those of other bloodsuckers) alter the victim's immune response to aid feeding. Perhaps also (and here I admit my ignorance) insect bites might trigger some allergy type immune pathway?

Whatever, I find a very distinct qualitative difference between my response to the two immune challenges. I've no idea if this is common in PWME and can't say what; if anything, it means?

Not impersonating the Prof in replying, but I wonder whether this thread about remission of symptoms when having hay fever might be relevant.

My own post suggests that maybe there is a switch in immunoglobulin type (expression, I suppose), although I see that the abstract I quote does not report clear evidence for this as the controls had abnormally high IgA and IgE levels, thus making it look as though the CFS people had low levels.

As I say in my post, an improvement in ME symptoms has coincided with the return of an old allergy which had been absent for years.

I think that something interesting may be going on with apparent remissions being contemporaneous with allergic reactions or infections.

 

[Marco]

Not impersonating the Prof in replying, but I wonder whether this thread about remission of symptoms when having hay fever might be relevant.

My own post suggests that maybe there is a switch in immunoglobulin type (expression, I suppose), although I see that the abstract I quote does not report clear evidence for this as the controls had abnormally high IgA and IgE levels, thus making it look as though the CFS people had low levels.

As I say in my post, an improvement in ME symptoms has coincided with the return of an old allergy which had been absent for years.

I think that something interesting may be going on with apparent remissions being contemporaneous with allergic reactions or infections.

I'll check the link and I'm not dismissing a connection but I do feel very distinctly worse after insect bites (which never bothered me pre-onset) but don't appear to pick up any colds/viruses doing the rounds. And I don't have as far as I'm aware any allergies apart to some rare adverse reactions to some prescription drugs.

 

[MeSci]

I'll check the link and I'm not dismissing a connection but I do feel very distinctly worse after insect bites (which never bothered me pre-onset) but don't appear to pick up any colds/viruses doing the rounds. And I don't have as far as I'm aware any allergies apart to some rare adverse reactions to some prescription drugs.

Maybe that reflects different subgroups? I have very few allergies either, but maybe the number of allergies isn't significant. When I have hay fever-type sneezing, etc., it doesn't coincide with an improvement in ME, but the re-emergence of the old wool allergy did. Conversely, my dermatitis and sinus congestion have improved with/as part of the ME improvement, but I suspect that they were not allergic in origin.

Complicated, eh?

 

[Marco]

Maybe that reflects different subgroups? I have very few allergies either, but maybe the number of allergies isn't significant. When I have hay fever-type sneezing, etc., it doesn't coincide with an improvement in ME, but the re-emergence of the old wool allergy did. Conversely, my dermatitis and sinus congestion have improved with/as part of the ME improvement, but I suspect that they were not allergic in origin.

Complicated, eh?

Funnily enough I have a wool 'sensitivity' too. Not an allergy - no rashes etc. Just can't stand the stuff - never could. Which ruled out any longstanding involvement in the BB, army cadets or anything else which involved wool!

Not exactly 'the right stuff'

 

[rosie26]

I have noticed with some strains of colds I feel better ME wise, but with other strains of colds I can feel worse with ME. So it is confusing for me.

 

[ahmo]

Smiles, sadly not, science needs more artists / writers asking questions to encourage lateral thinking. Or perhaps a few four years old asking but Daddy why does this happen???? Sometimes innocence asks the right questions

This is why a (the?) major cancer research organization in the US last year put physicist Paul Davies on the job, to look at the whole field anew. And he's come up with some very interesting results, re typically cancer is being attacked the wrong way, at the wrong part of the cell life cycle. sorry I don't have a clearer explanation, he can be searched.

I also never get colds, have had flu probably twice in my life, and a tendency to strong histamine response to bites, with no seasonal allergies.

 

[Leopardtail]

I have noticed with some strains of colds I feel better ME wise, but with other strains of colds I can feel worse with ME. So it is confusing for me.

does it vary with the initial level of fatigue?

 

[rosie26]

does it vary with the initial level of fatigue?

Yes, it is the ME fatigue that is worse with some colds and those colds seem to take longer to recover from.

I think it is the same no matter what the initial level of fatigue I start out from - no matter what ME level I may be at.

 

[MeSci]

Funnily enough I have a wool 'sensitivity' too. Not an allergy - no rashes etc. Just can't stand the stuff - never could.

I'm pretty sure mine is an allergy. I get intense itching as soon as it touches my skin - it prickles unbearably, and I think I do get a temporary red rash.

But for many years with ME I was able to wear wool without problems. So it seemed to me that whatever happens in 'my' ME it switches off certain allergic reactions.

 

[MeSci]

I'm pretty sure mine is an allergy. I get intense itching as soon as it touches my skin - it prickles unbearably, and I think I do get a temporary red rash.

But for many years with ME I was able to wear wool without problems. So it seemed to me that whatever happens in 'my' ME it switches off certain allergic reactions.

Just come across another paper (thread started here) that suggests associations between allergy and ME (via leaky gut), this time that leaky gut is positively associated with eosinophilic oesophagitis.

As quite a lot of us have found improvement in some ME symptoms from a leaky-gut diet, that come along with obvious improvement in gut function, and some of us have also experienced improvement or remission of allergic problems such as dermatitis from the diet, I wonder whether this means that leaky gut can cause all the various illnesses, including some types of ME, or whether the link is more complex.

So some allergic problems appear to be positively associated with (some) MEs, whilst others appear to be inversely associated with (some) MEs.

Any ideas, @Jonathan Edwards?

 

[Leopardtail]

I'm pretty sure mine is an allergy. I get intense itching as soon as it touches my skin - it prickles unbearably, and I think I do get a temporary red rash.

But for many years with ME I was able to wear wool without problems. So it seemed to me that whatever happens in 'my' ME it switches off certain allergic reactions.

Yes so do I, I can't abide wool jumpers now....

 

[MeSci]

Yes so do I, I can't abide wool jumpers now....

But how does that correlate with your ME - positively/directly or inversely? That's the connection we are looking at.

 

[Leopardtail]

But how does that correlate with your ME - positively/directly or inversely? That's the connection we are looking at.

started post ME, but now sure now it correlates with fatigue levels, since I now only wear cotton.

 

[A.B.]

I have some questions about fluctuating symptoms that I hope are not off topic here: I've read that fluctuating symptoms are typical for autoimmune diseases.

How reliable are they as indicator of autoimmune disease?

Why do the symptoms fluctuate? Does the immune system have its own rythms, or are there some subtle triggers, or something else?

And by fluctuating symptoms I mean not merely bad or good days, but sudden worsening for no apparent reason (plenty of rest, no recent exertion, no stress, feeling relatively good before, not taking medication that could reasonably have such side effects, no sign of infection, eating healthy food only, etc.) that takes weeks to resolve fully.