Why is the forum not separated by subtype/subgroup?

[Uknmy]

Here and there someone will mention in a thread that they have the same subtype/subgroup (not sure what term you use) of CFS.

Does it not make sense to create separate forums for different subtypes? Clearly a lot of the people on this board have very different illnesses from one another, with very different causes.

 

[Hip]

Whilst it is often assumed that ME/CFS may consist of different subtypes of the disease, no subtypes have reliably identified, so nobody knows what subtypes exist, or what subtype they are.

 

[Archie]

I know my type, which is CFS and NOT ME.

 

[southwestforests]

I know my type, which is CFS and NOT ME.

I don't understand how that is possible.
CFS is ME.

For instance;

CFS is also known as ME, which stands for myalgic encephalomyelitis. Many people refer to the condition as CFS/ME.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

and

Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
This condition is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). Sometimes it's abbreviated as ME/CFS.

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

and

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

https://www.meaction.net/about/what-is-me/

and

Chronic Fatigue Syndrome Gets a New Name
By David Tuller February 10, 2015 11:01 am February 10, 2015 11:01 am

The Institute of Medicine on Tuesday proposed a new name and new diagnostic criteria for the condition that many still call chronic fatigue syndrome.

Experts generally agree that the disease has a physical basis, but they have struggled for decades to characterize its symptoms. The new report may help improve diagnosis, but the recommendations are unlikely to end the long, contentious debate over who has the condition and what may be causing it.

An institute panel recommended that the illness be renamed “systemic exertion intolerance disease,” a term that reflects what patients, clinicians and researchers all agree is a core symptom: a sustained depletion of energy after minimal activity, called postexertional malaise.

The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” said Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition.

An alternate name for the illness, myalgic encephalomyelitis, meaning “brain and spinal cord inflammation with muscle pain,” was coined decades ago. Many experts now refer to the condition as M.E./C.F.S.

https://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/

 

[chger]

I would say i am also Qualifying more for CFS Than ME.
Main Symptom tiredness and mental fatigue, unrefreshing sleep, brain fog, cognitive problems.
Also alcohol intolerance and PEM, but not in such degree as others

No Flue like feeling, pain or muscle Weakness (which i assign more to ME)

 

[Archie]

@southwestforests

CFS is not ME .

There was, and still is a well defined disease myalgic encephalomyelitis ME , which is severe disease caused by infection, quite well documented from over 70 years. There was no good reason to dump the original name & criteria of ME , the new naming that merged with CFS is artificial . . . since the CFS part has no same kind of proofed disease etiology as do ME .

 

[Rufous McKinney]

CFS is not ME

The name thing cycles again and again. Knowing that CFS was invented in the 1980s and created a message that has confused the public ever since, I contend we should cease and desist from using it directly.

Its common terminology, not scientific words, are more readily understood by the general public, but that also includes their misunderstandings ("You should take a dance class") ("Gee, I wish I could sleep all day" Ricky Gervais) . Maybe after 100 years, the words for ME might become more commonly understood.

When it comes up now...(awkwardly)....I tend to describe the illness using some other means- I might say- I have a metabolic disorder....OR.....my mitochrondria don't work correctly. When I say something like that, people seem to rather get it (altho' in a recent example, I was continuously being asked to: come with, sit down, chat, would I like to go shopping also?)....(so they didn't get it, actually). Perhaps next time, I'll try out- my lower brain stem has collapsed (not proven, but possible)...that might engender some type of comprehension.

I do wish more research attention and publicity would be paid to the trajectory and progression of this illness, its stages and subgroups. It has a direct bearing on the advisability of continuing to do stressful work while ill with ME. And perhaps more bungee jumpers need to be warned.

Until then: we wait.

 

[Mary]

THIS THREAD IS BEING RE-OPENED. PLEASE REFRAIN FROM PERSONAL COMMENTS OR ATTACKS - RULE 1, FORUM RULES EXPLAINED, STATES IN PART:

When a member chooses to attack the author of a post rather than the content of the post, that is a personal attack. Please keep your focus on the facts of the topic under discussion - not on the person with whom you disagree.

 

[Uknmy]

What I meant is that CFS/ME seems to be an umbrella term for a group of undiagnosed illnesses that share the common symptoms of PEM, fatigue, flulike symptoms, etc. Ultimately these symptoms may be caused by the same physiological phenomenon, be it mitochondrial dysfunction, a metabolic trap, or what have you. I am not refuting the idea that the same thing could be happening biologically in all of us, I am saying that CFS is a downstream effect of a pathogenic illness in most cases.

Maybe grouping people together who have unique symptoms would make it easier to identify the pathogenic cause for that subgroup.

For example, I've noticed posts where people mention that they have experienced rapid fat loss (like me) at the onset of the disease, and I think that is a unique enough symptom that a group of those patients should be analyzed separately from the broader CFS umbrella despite the symptoms we have in common. That way, rather than looking at downstream effects, we have a possibility of identifying the root cause for that group. You can't find a pathogenic cause for CFS when you study a group of people who all got CFS in a different way.

EDIT: For example, if a group of people who got CFS after a car accident or neck injury grouped together they would have been likely to discover their CFS was caused by CCI (prior to the CCI discovery I mean).

One thing that I find frustrating (and I know others do as well) is that there is a lot of research being done on CFS, but not much research being done on what actually causes it.

 

[valentinelynx]

if a group of people who got CFS after a car accident or neck injury grouped together they would have been likely to discover their CFS was caused by CCI (prior to the CCI discovery I mean).

You might think that, and I think it's a common assumption. But, although it's really very preliminary, I'm hearing (e.g. from @Hip regarding the data he's collecting) that a surprising number of ME/CFS patients that are being diagnosed with CCI had what appeared to be a clearly infectious (or at least inflammatory) onset: sudden onset, fever, flu-like malaise, etc. I'm among that group. But I also had a few traumatic incidents in the year or two immediately before my illness onset: falling on the back of my head in Aikido (during a roll) and a rear-ending of my car. These incidents, while they caused me pain, didn't slow me down at all. The illness onset was out-of-the blue.

If it were easy to divide ME/CFS patients into clear subgroups, it would have happened by now. Yes, the junior CDC agent Holmes coined the ridiculous term Chronic Fatigue Syndrome after visiting Incline Village during that outbreak in the 1980s, but that doesn't mean that those patients did not have an illness very much like Ramsey's Myalgic Encephalomyelitis.

Bottom line: I really wish we patients would stop dividing ourselves. Believing that someone diagnosed with CFS can't have ME isn't helpful. Certainly many people are misdiagnosed with CFS, because their doctors fail to rule out other illnesses that can cause profound fatigue and other symptoms seen in CFS. But that doesn't mean that those diagnosed with CFS necessarily have a different illness than ME. Nobody likes the name CFS, but let's not throw the patients out with the name!

 

[wabi-sabi]

Well said @valentinelynx !

I think Dr. Bateman gives good talk here that can alleviate some of the confusion around naming conventions.

It was just posted recently, so it's very apropos.

 

[Uknmy]

You might think that, and I think it's a common assumption. But, although it's really very preliminary, I'm hearing (e.g. from @Hip regarding the data he's collecting) that a surprising number of ME/CFS patients that are being diagnosed with CCI had what appeared to be a clearly infectious (or at least inflammatory) onset: sudden onset, fever, flu-like malaise, etc.

Ok, maybe that was a bad analogy.

The point I'm trying to make is if you take 100 random people who have CFS and test the group to see if they have a pathogen in common you aren't going to find one because they all got CFS in a different way. There could be 5 or 10 or more subgroups within that group of 100 people. The only way to find a pathogenic cause of the illness is to split those hundred people into their respective groups. Maybe you can only reasonably identify a strong bond between 5 of them, but it's still more effective than analyzing a larger group of people with totally unrelated diseases. Identifying the cause for those 5 people won't cure all 100, but we can do a few subgroups at a time and get them cured/treated, rather than focus on the 100 and cure none of them.

Think about Koch's first postulate for establishing a causative relationship between a microbe and a disease:

1. The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy organisms.

The way the CFS community has been going about it, it is impossible to satisfy this requirement.

(Edited for clarity)

 

[Hip]

Think about Koch's first postulate for establishing a causative relationship between a microbe and a disease:

1. The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy organisms.

The way the CFS community has been going about it, it is impossible to satisfy this requirement.

Koch's original postulates are fine for classical infectious diseases like smallpox, cholera or HIV, but do not work very well when it comes to more modern ideas linking pathogens to various chronic diseases.

For example, coxsackievirus B4 infection of the pancreas is linked to type 1 diabetes. However, you also find coxsackievirus B4 in healthy people. So that contradicts Koch's first postulate; but nevertheless CVB4 may well turn out to be the cause of T1D.

Same applies to ME/CFS. About half of ME/CFS cases are linked to enterovirus infection, and biopsies of muscle or intestinal tissue will test positive for enterovirus infection by PCR or enterovirus VP1 protein. However, you also find the same infection in the tissues of healthy people, although much less frequently.

It may be the location of the infection which is very important: it's probable that you will not get T1D until CVB4 specifically infects the pancreas. And in ME/CFS, it's possible that you do not get this disease until an enterovirus like coxsackievirus B specifically infects the brain (ME/CFS autopsies have shown enterovirus brain infections only in ME/CFS patients, but not controls).

 

[Uknmy]

Koch's original postulates are fine for classical infectious diseases like smallpox, cholera or HIV, but do not work very well when it comes to more modern ideas linking pathogens to various chronic diseases.

For example, coxsackievirus B4 infection of the pancreas is linked to type 1 diabetes. However, you also find coxsackievirus B4 in healthy people.

Is CVB4 found in the pancreas in healthy people? I think Koch's first postulate still works here. If we were examining a group of people who spontaneously went blind and discovered that they all had MRSA infections in their eyes, I think it would be reasonable to conclude that it was the cause of their blindness despite the fact that other people get MRSA and don't go blind.

Same applies to ME/CFS. About half of ME/CFS cases are linked to enterovirus infection, and biopsies of muscle or intestinal tissue will test positive for enterovirus infection by PCR or enterovirus VP1 protein. However, you also find the same infection in the tissues of healthy people, although much less frequently.

It may be the location of the infection which is very important: it's probable that you will not get T1D until CVB4 specifically infects the pancreas. And in ME/CFS, it's possible that you do not get this disease until an enterovirus like coxsackievirus B specifically infects the brain (ME/CFS autopsies have shown enterovirus brain infections only in ME/CFS patients, but not controls).

This is all consistent with what I said and I agree with you.

With any luck the Rega Institute actually has an effective drug and we will see it sometime in the next few years. Curing the infection seems like a nice shortcut in comparison to attempting to understand the exact mechanism by which it causes disease.

 

[Hip]

Is CVB4 found in the pancreas in healthy people? I think Koch's first postulate still works here. If we were examining a group of people who spontaneously went blind and discovered that they all had MRSA infections in their eyes, I think it would be reasonable to conclude that it was the cause of their blindness despite the fact that other people get MRSA and don't go blind.

Yes, I think we agree that the specific organs which are infected may often be important, rather than whether the host as a whole is infected.

Koch's original postulates do not state this, but Fredricks and Relman updated Koch's postulates for the 21st century, and in this update, they state in rule 6 that the organs infected are important; and they relax the rule that the pathogen should not be found in healthy organisms (instead in rule 2 they say that there should be no or fewer copies of the pathogen's genes in hosts or tissues without disease).


But of course all this is easier said than done. Dr Chia published a new ME/CFS brain autopsy a few years ago, where he detected enterovirus in the brain. But only three ME/CFS brain autopsies have so far tested for enterovirus; Chia says the issue is that we do not have enough brains to test.

 

[valentinelynx]

I think Dr. Bateman gives good talk here that can alleviate some of the confusion around naming conventions.

It is a good talk, thanks for posting it. For a good slide summarizing the populations captured by the various diagnostic criteria from Holmes in 1988 to the IOM in 2015 see the Venn diagram at about minute 26.

 

[wastwater]

Maybe there should be a sub group for those who had accute onset after there first encounter with EBV in the teen years who never fully recover
It could be signified by having a colour on you’re motif

 

[taniaaust1]

Bottom line: I really wish we patients would stop dividing ourselves. Believing that someone diagnosed with CFS can't have ME isn't helpful. Certainly many people are misdiagnosed with CFS, because their doctors fail to rule out other illnesses that can cause profound fatigue and other symptoms seen in CFS. But that doesn't mean that those diagnosed with CFS necessarily have a different illness than ME. Nobody likes the name CFS, but let's not throw the patients out with the name!

I think you missed the point, ones who divide themselves from CFS and say they have ME are not doing it just cause of that stupid name the CDC gave ME during the Tahoe outbreak but cause CFS usually does have a very different illness presentation to ME and this patient group often has different complications, often tries different therapies etc etc (eg antivirals etc) to CFS (non ME according to historic outbreaks). Many who have CFS do not find exercise harmful.. where as with many with ME exercise could end up deadly.

I follow ME recommendations now as when I have not done so I have ended up with big problems and I would not recommend those recommendations to someone who appears as a CFS person and has a very different presentation to me as they are less likely to be good recommendations for them.

Lumping these together is not helpful for anything except maybe for advocacy numbers to have possibly two different illnesses lumped as one and it is not about throwing any group out with a name. Just cause someone who has CFS does not meet something like the International definition for ME it does not mean that other person is quite generally sick too.

 

[taniaaust1]

Ok, maybe that was a bad analogy.

The point I'm trying to make is if you take 100 random people who have CFS and test the group to see if they have a pathogen in common you aren't going to find one because they all got CFS in a different way. There could be 5 or 10 or more subgroups within that group of 100 people. The only way to find a pathogenic cause of the illness is to split those hundred people into their respective groups. Maybe you can only reasonably identify a strong bond between 5 of them, but it's still more effective than analyzing a larger group of people with totally unrelated diseases. Identifying the cause for those 5 people won't cure all 100, but we can do a few subgroups at a time and get them cured/treated, rather than focus on the 100 and cure none of them.

Think about Koch's first postulate for establishing a causative relationship between a microbe and a disease:

1. The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy organisms.

The way the CFS community has been going about it, it is impossible to satisfy this requirement.

(Edited for clarity)

Trying to subgroup according to how a person got sick (though this seems to be done with Gulf war syndrome with the vetarans which actually presents just like CFS) would be so hard as with lots of us it could of been many different things and what is it takes a multiple triggers to occur.

eg In my case before I got ME I'd gone through that year multiple Hep B vaccinations which were not working so they keep giving me more shots, I was living in a house which bathroom had no ventilation and hence the house developed a serious mold issue (the house also had a severe water issue with water leaking into the home and seeping up in between floor boards).

I'd also around that time been in accidents and ended with whiplash and having to see a chiro for neck injury. I also had a highly stressful life, trying to raise 2 young kids alone one who had a severe disability requiring a lot of care while trying to do full time study and I firstly got ill during exams or trying to meet deadlines with college assignments I was struggling to get done. So what was my ME trigger??? who knows. It could of been any of those things or none of those things or the whole combo of things.

or could of my ME be related to things I may of always had or an exposure when younger? I think I already had something wrong with my immune system due to just how bad I'd had EBV over 10 years before but I'd recovered from that after a term in bed, it never went into ME/CFS. ME/CFS runs in my family too, 3 family members developed it after me and when I read family history there also appears to have been another family member with ME before I was even born.

I also had very toxic chemical exposure as a child eg sheep dips along with chemicals illegally dumped into a paddock as they were too unsafe to be dumped the public dump... the girl who I used to horse ride with where the illegal dumping was at and the horses were kept in that paddock.. she developed ME too many years later possibly around the same time as I did (did my small town have a bit of an outbreak?).

My grandmother had exposure to an actual ME outbreak in the 1950s which affected 600? (the family ME/CFS come from that side of the family from my grandmother (she only had FM though) and that was around the time my father was bor). So anyway, it's impossible to know what contributed to me getting ME/CFS as an adult and I think lot of people do not know what caused them to develop this. Even if you think you know, it could well turn out not to be right and coincidental.

I personally subgroup according to actual symptoms and the whole symptom complex (though would say GWS is GWS so I guess I also do depending on how people ended up sick too if they know. There is also ME outbreaks but I have not heard of CFS outbreaks unless it's the CDC choosing to call CFS ME, obviously Lake Tahoe was an ME outbreak.

 

[taniaaust1]

Here and there someone will mention in a thread that they have the same subtype/subgroup (not sure what term you use) of CFS.

Does it not make sense to create separate forums for different subtypes? Clearly a lot of the people on this board have very different illnesses from one another, with very different causes.

Uknmy, I think that would be way too hard and akward to do, lots of people dont even know their subgroup when they come here and how would one distinguish the subgroups. There seems to be quite a few different ones beyond just the CFS or ME thing eg the EDS/POTS/mast cell disorder combo subgroup seems to be a possible distinct group.

The best thing to do if to get to know the regulars and work out who has like illness so to know who posts may contain the most useful advice for you. And when it comes to studies.. check to see how the participants were picked to see if it fits with your own illness. eg I think Im at much greater risk of getting thyriod cancer as I matched the selected participants in one ME/CFS study who also had certain other issues and the study showed a much higher risk of this cancer with that group. It was recommended that those who had all those things have a scan every couple of years for thyriod cancer due to the increased risk.