CFS Central - Q and (no) A with CDC SCIENTISTS

[SOC]

A more fundamental step (and one that I assume we can all agree upon) is to first stop accepting studies of CDC defined CFS (as per the well documented concerns of L Jason).

Agreed. There's not much point in doing subsetting if we continue to include CDC's not-ME/CFS patients. They created so much "noise" in the data that no real patterns can be seen.

I can't get over the shockingly poor structuring of their data set. And while I'm thinking about it, can anyone who has read the paper explain the comings and goings of samples as described in the abstract? First there's 51 "CFS" samples, then there's 50; first there's 56 controls, then there's 53, then there's 56 again. Is it normal in biological research studies not to maintain the complete, unadulterated sample set throughout the research?

 

[Angela Kennedy]

With the greatest of respect to everyone here - and for the sake of argument - all we have is your retrospective 'self-reporting' narrative of 'sudden' onset.: which may not be reliable (I'm sure you'll understand why- consider the self- reporting of 'feeling better' in the flawed CBT trials? Retrospective beliefs in 'stress' before onset- even though 'stress' is a ubiquitous experience?)

Even IF your retrospective self reporting is accurate, others might have taken a few weeks to realise they still, say, felt crappy. CHILDREN may have been trying to shake off 'feeling like death' in order to get back to skateboarding or drama club or even school. It would be hard to argue they were therefore 'gradual' onset.

There are massive problems in trying to ascertain a 'sudden' versus 'gradual' onset in anyone.

 

[gracenote]

You're right, Gracenote. I intentionally said sudden onset is more likely to be caused by infection, leaving out the "XMRV." It is entirely possible that XMRV infection could be dormant for awhile and have a more gradual impact on humans. No one knows for sure. . .

. . . The way to see if infection (XMRV or otherwise) plays a role in the onset of symptoms is to first look at the sudden onset group, as sudden onset is more likely to be caused by infection. . .

jspotila,

You did mention XMRV — "(XMRV or otherwise)" — and that is why I responded as I did. We don't know the impact of this retrovirus on human bodies yet, and I think we are making assumptions that it will initially show up the way it does in sudden onset cases.

I had gradual onset. I fit the CCC criteria. I tested positive for XMRV. We don't yet know what we don't know about how this retrovirus impacts us. Looking at how other retroviruses have been documented to impact body systems, I think it is too early to try to separate out sudden and gradual onset groups. If we can agree on diagnostic criteria (such as CCC) to be used in studies, then I think onset is irrelevant.

I do agree with you here "No one knows for sure."

 

[CBS]

As one who reportedly remembers (treading into dangerous territory here) a sudden onset, I have to say I'm uncomfortable with this characterization as heading down a very slippery slope.

I suggest we stay away from questioning others' reports. I repeat that there are bigger more pressing issues with cohorts that the research community has failed to address.

 

[dean]

With the greatest of respect to everyone here - and for the sake of argument - all we have is your retrospective 'self-reporting' narrative of 'sudden' onset.: which may not be reliable (I'm sure you'll understand why- consider the self- reporting of 'feeling better' in the flawed CBT trials? Retrospective beliefs in 'stress' before onset- even though 'stress' is a ubiquitous experience?)

Even IF your retrospective self reporting is accurate, others might have taken a few weeks to realise they still, say, felt crappy. CHILDREN may have been trying to shake off 'feeling like death' in order to get back to skateboarding or drama club or even school. It would be hard to argue they were therefore 'gradual' onset.

There are massive problems in trying to ascertain a 'sudden' versus 'gradual' onset in anyone.

I respect your opinion and sense your frustration however there are acute or slow onset to many of the same diseases in medicine. It is part of any medical history given to medical providers. Sure it is self reporting, but so is all medical histories.... and this information can be collected and quantified if done right. Happens all the time.

There is much evidence that some people with CFS had acute onset. I did. I didnt know that many others had similar onsets until I began to talk to people here and else where. For some of us it is a hallmark of this disease. What does this mean. I dont have a clue and neither does anyone else. This doesnt mean that people with slow onset dont have CFS. Again what does this mean. Again I dont have a clue.

Slow or acute onset can be teased out in a properly designed survey with the right follow up questions, testing for reliability, etc. This is done and validated in survey research all the time. Teasing out for analysis slow or acute onset of CFS might prove to be useful. Then again it might be random. It is just unknown at this point.

In addition, regarding feeling better. Many of us have felt better from time to time. (talking about cures is a totally different kettle of fish) For me I felt better even years and then worse again. What does this mean...again I have not a clue.

So acute versus slow onset of symptoms of CFS, the waxing and waning of symptoms etc are real and can be measured and analyzed if done right.

 

[usedtobeperkytina]

Is there a gradual / sudden onset category? That is me.

I have had vasovagal hypotension (and no doubt neurally mediated hypotension) since I was 5. I don't notice any heart problems with it though. But I faint at the least sudden stress, like stubbing my toe. And my faints turn into seizures. And I also get dizzy standing up. It was diagnosed by a nurse who took my blood pressure in different body positions. And pediatric neurologist confirmed it.

Through the years, I have had adult acne, IBS symptoms, and a rash from dish detergent that lasted for a year, then disappeared. ot

In 2003, I got a virus that came and went throughout the whole year (cold or flu type) or it was multiple viruses. I also had short periods (a few days) of depression on and off during the year.

Then, I started having what I now know are CFs symptoms with my period. And they were severe. And it started with first day. After a few months, it was happening on two days, then the whole week. Then other days of the months. Then, cognitive problems were noticeable. Then I was sleeping more hours, yet still fatigued. It grew gradually.But for much of that time, I worked for myself without an 8-5 schedule, so I didn't know how much was my lifestyle or how much was what appeared to be a hormonal problem creeping in. But, by spring of 2006, I figured something was wrong besides just female stuff and stress. That summer, I struggled to get out of bed before 11 a.m.

Then, on July 16, 2006, I plummeted. It was about midnight and I was working to meet a deadline. It came over me like a wave. And the pain started at that moment, whereas the fatigue, IBS, and cognitive problems were before, the pain started right then. So, it appears to me, my CFS was gradual but the FM came on me suddenly. (The plummet did make my CFS much worse though.)

I don't have a problem doing separate figures on sudden onset and gradual onset. But I would have a hard time knowing which one I fall into. And each need to be studies side by side. If studies reveal consistent results in both groups, then over time, the distinction in studies need to be stopped. Under no circumstance would I think it appropriate to do a study on one group without out doing same study on the other group. Just give them numbers, then when unblinded, you can report the results of both groups.

Tina

 

[SOC]

With the greatest of respect to everyone here - and for the sake of argument - all we have is your retrospective 'self-reporting' narrative of 'sudden' onset.: which may not be reliable (I'm sure you'll understand why- consider the self- reporting of 'feeling better' in the flawed CBT trials? Retrospective beliefs in 'stress' before onset- even though 'stress' is a ubiquitous experience?)

Even IF your retrospective self reporting is accurate, others might have taken a few weeks to realise they still, say, felt crappy. CHILDREN may have been trying to shake off 'feeling like death' in order to get back to skateboarding or drama club or even school. It would be hard to argue they were therefore 'gradual' onset.

There are massive problems in trying to ascertain a 'sudden' versus 'gradual' onset in anyone.

With all due respect in return, :Retro smile: we are not describing anything "others might have taken a few weeks to realise they still, say, felt crappy". This is not "feeling crappy". I'm talking feeling fine at 4:00 and at 6:00 not being able to figure out how to saute onions when they're already in the pan and on the stove. If you don't want my "self-reporting", I can give you more than a dozen people who saw the process first hand.

With all due respect, you just don't get it. That's okay, but don't deny our experience. It's very clear if you've been through it, and I, at least, happen to have plenty of people who can verify my report of stunningly rapid and severe onset.

I spent a large amount of time in college "feeling crappy" with mono I refused to recognise, having at least one flu and strep and bronchitis a year, having "walking pneumonia" four times. And yes, that feels crappy and you can deny it for a while, and go to drama club or skateboarding. What I'm talking about is NOT that. This is entirely different, and startling to everyone who sees it.

 

[SOC]

Let me be clear that I do not deny in any way, shape, or form, that gradual onset or mixed onset cases are ME/CFS. It seems to me that there are quite a few paths to the end state and all could be explained by XMRV or other hypotheses.

 

[dean]

I spent a large amount of time in college "feeling crappy" with mono I refused to recognise, having at least one flu and strep and bronchitis a year, having "walking pneumonia" four times. And yes, that feels crappy and you can deny it for a while, and go to drama club or skateboarding. What I'm talking about is NOT that. This is entirely different, and startling to everyone who sees it.

You are getting at something very important. Many of us had lived a long time before we had CFS. We had had all sorts of infections from flu's to ameobic hepatitis infected teeth, concussions, gunshots and broken bones. Then we got our thing. No question about it. It was startling, like nothing else that ever came before.

 

[Angela Kennedy]

Let me be clear that I do not deny in any way, shape, or form, that gradual onset or mixed onset cases are ME/CFS. It seems to me that there are quite a few paths to the end state and all could be explained by XMRV or other hypotheses.

That is all I'm asking for really. I'm afraid it will not happen though. It's already being used as a way to try and 'separate' people.

I will qualify my 'feeling crappy': it is a colloquial expression, actually how my daughter, at the time, a child, described herself. She is full-blown specifically 'Canadian' qualifying illness with a 'CFS/ME' diagnosis. Her 'feeling crappy' was a fast degeneration into devastating illness (how 'sudden' though?).

See how easy our respective value judgements of the term 'feeling crappy' leads to confusion? This is exactly the sort of problem we are all facing, and have been for years, from the research literature that relies on subjective self-report and not objective physiological findings.

Also - Dean- please don't 'sense my frustration'. I'm arguing logically, and it's very difficult for anyone here to successfully 'sense' others' tone in internet forums. Plus it makes me sound 'emotional', which is not on.

 

[dean]

Also - please don't 'sense my frustration'. I'm arguing logically, and it's very difficult for anyone here to successfully 'sense' others' tone in internet forums. Plus it makes me sound 'emotional', which is not on.

sorry that i offended you by saying i sensed frustration. I was just projecting my own feeling of frustration.

 

[SOC]

That is all I'm asking for really. I'm afraid it will not happen though. It's already being used as a way to try and 'separate' people.

It is quite likely that scientifically we will need to separate cases. Using CCC alone, we are a diverse group with a large variety of symptoms. Even if there turns out to be a single common factor, it appears that we are being affected differently. One way to tease out details and determine effective treatment will be to subset our very heterogenous group.

For example, say that we all have XMRV. One of its major effects could be to reduce the function of our immune systems. The result is that we all get secondary infections -- different ones -- that cause many of our actual symptoms. Or maybe it's a matter of which organ systems are most severely affected in each patient. Either way, subsetting can help us understand this illness. This is just an example, there are lots of possibilities. We're at the very beginning of learning about this illness.

Subsetting us scientifically does not mean we have to segregate ourselves personally. We all have this horrid illness and few people who don't have it really understand the toll it takes on every one of us. We need to work together to solve this, but we also need to let science work the best way it can to get to the bottom of this.

 

[Angela Kennedy]

It is quite likely that scientifically we will need to separate cases. Using CCC alone, we are a diverse group with a large variety of symptoms. Even if there turns out to be a single common factor, it appears that we are being affected differently. One way to tease out details and determine effective treatment will be to subset our very heterogenous group.

For example, say that we all have XMRV. One of its major effects could be to reduce the function of our immune systems. The result is that we all get secondary infections -- different ones -- that cause many of our actual symptoms. Or maybe it's a matter of which organ systems are most severely affected in each patient. Either way, subsetting can help us understand this illness. This is just an example, there are lots of possibilities. We're at the very beginning of learning about this illness.

Subsetting us scientifically does not mean we have to segregate ourselves personally. We all have this horrid illness and few people who don't have it really understand the toll it takes on every one of us. We need to work together to solve this, but we also need to let science work the best way it can to get to the bottom of this.

Possibly. Let's not run before we can walk though- or rather - please, Scientists - focus on the basics first. How many research cohorts of Canadian defined ME/CFS have been established, anywhere? IF they are established, THEN there might be a POSSIBILITY of 'sub-setting', taking on board the problems already identified even in this forum.

And I hope you understand that my interrogating notions of 'sudden' versus 'gradual' is certainly not segregating anyone. I'm actually arguing AGAINST inappropiate segregation - though inevitably there has to be some scientific separation of 'Canadians' against 'Fukudians' and the 'Oxfordians' and 'Reevians'. Jason has already shown this to be the case. Will this lead to 'segregation'? It might. What are the implications of that?

 

[Angela Kennedy]

sorry that i offended you by saying i sensed frustration. I was just projecting my own feeling of frustration.

Ok Dean. Appreciated.

 

[Forbin]

It may be that most people who get CFS have been carrying latent XMRV around for a long time. Some of those people may get "gradual onset" as the result of numerous low-level co-infections, while others get "sudden onset" following an acute infection with some more virulent “trigger” such as with EBV or a flu virus. It also may be that, in some people, the acute triggering infection is XMRV itself.

According to Dr. Mikovits, XMRV replicates when infected cells divide and “only when they divide.” There is rapid cell division in an activated immune system, so that may be a key pathway to activating XMRV. That would also suggest an explanation as to how people become ill after things like vaccinations or even after severe physical trauma, such as in an auto accident.

- - -​

I had “sudden onset” three weeks after the most intense “flu” of my life. During those three intermediate weeks, I felt I was recovering normally – although, I was occasionally tired and my vision occasionally seemed a bit “off,” as though my visual perspective was slightly distorted.

On April 15, 1983 (at around 5:00 PM, to be exact), I became extremely dizzy out of the blue. That is what I have always considered the “sudden onset” of my symptoms. I developed a bunch of other classic CFS symptoms in the days, weeks and months that followed. In retrospect, the flu I experienced three weeks earlier seems to have been a clear precursor.

I was unsure of whether this kind of onset was consistent with CFS until I read a short 1986 monograph by Dr. Melvin Ramsay entitled “MYALGIC ENCEPHALOMYELITIS: A Baffling Syndrome With a Tragic Aftermath.” In it he writes:

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of 'feeling awful'. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying 'this patient's problem does not come within my field'. Nevertheless, by this time the unfortunate patient has acquired the label of 'neurosis' or 'personality disorder' and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

http://meactionuk.org.uk/ramsey.html​

I had sudden onset, but I'm sure that other more gradual onset types occur.

 

[usedtobeperkytina]

It may be that most people who get CFS have been carrying latent XMRV around for a long time. Some of those people may get "gradual onset" as the result of numerous low-level co-infections, while others get "sudden onset" following an acute infection with some more virulent “trigger” such as with EBV or a flu virus. It also may be that, in some people, the acute triggering infection is XMRV itself.

According to Dr. Mikovits, XMRV replicates when infected cells divide and “only when they divide.” There is rapid cell division in an activated immune system, so that may be a key pathway to activating XMRV. That would also suggest an explanation as to how people become ill after things like vaccinations or even after severe physical trauma, such as in an auto accident.

- - -​

I had “sudden onset” three weeks after the most intense “flu” of my life. During those three intermediate weeks, I felt I was recovering normally – although, I was occasionally tired and my vision occasionally seemed a bit “off,” as though my visual perspective was slightly distorted.

On April 15, 1983 (at around 5:00 PM, to be exact), I became extremely dizzy out of the blue. That is what I have always considered the “sudden onset” of my symptoms. I developed a bunch of other classic CFS symptoms in the days, weeks and months that followed. In retrospect, the flu I experienced three weeks earlier seems to have been a clear precursor.

I was unsure of whether this kind of onset was consistent with CFS until I read a short 1986 monograph by Dr. Melvin Ramsay entitled “MYALGIC ENCEPHALOMYELITIS: A Baffling Syndrome With a Tragic Aftermath.” In it he writes:

http://meactionuk.org.uk/ramsey.html​

I had sudden onset, but I'm sure that other more gradual onset types occur.

Good points. I think Mikovits' theory also rings true for gradual onset. The way she described is that the immune system tries to keep the virus down. We know there are antibodies. She said that if the triggers keep up, with each flood of the virus, the immune system loses ground in the battle, until there is a tipping point. So I can see where the tipping point can be a sudden onset of symptoms or, as has been suggested, maybe multiple little squirmishes with other infections or stress or progesterone spikes, so that with each one, more damage is done. Immune system attacks again, but then another trigger, and so it gets worse gradually.

Tina

 

[SOC]

Good points. I think Mikovits' theory also rings true for gradual onset. The way she described is that the immune system tries to keep the virus down. We know there are antibodies. She said that if the triggers keep up, with each flood of the virus, the immune system loses ground in the battle, until there is a tipping point. So I can see where the tipping point can be a sudden onset of symptoms or, as has been suggested, maybe multiple little squirmishes with other infections or stress or progesterone spikes, so that with each one, more damage is done. Immune system attacks again, but then another trigger, and so it gets worse gradually.

Tina

Yup, that's my current mental model for XMRV infection of ME/CFS patients, too. But, as with most people here, I imagine, that model is open to change as we get more info. :Retro smile:

 

[Marco]

I find the whole issue of subsets and sudden/gradual onset problematic. The discussion reminds me of those figure ground visual illusions - is it a black vase or two white faces?

I would tend to class myself as gradual onset, as I tend to identify sudden onset with a confirmed viral infection. I don't recall this in my case, but then again circumstances at the time could easily have exposed me to one. My symptoms have changed and increased over time, I didn't have any cognitive issues for 10 years and I wouldn't describe my general condition then as 'fatigue'. "Feeling crappy" was probably a more accurate description in those days although I would probably expressed it more as 'feeling like crap'.

On the other hand I can definitely recall feeling 100% well and then suddenly not well and as regards aerobic exercise tolerance the change was instantaneous. I collapsed and haven't been able to tolerate aerobic exercise since.

So, to my eyes, sudden/gradual onset is just a matter of perpective.

If and when XMRV is ID'd as the pathogen, then the 'subsets' - i.e. the particular pattern of symptoms and sudden/gradual onset - become merely a matter or individual differences in constitution and circumstances.

What it will ensure though is that we can put clear blue water between XMRV ME/CFS and the Georgia 'subset' known as Reeves' Disesase or 'Scarlett O'Hara Syndrome'.

 

[Mithriel]

It is immensely frustrating that Melvin Ramsay described what I have in 1986 yet the CDC twenty four years later is doing research on people who have nothing in common with me.

They should go away and leave us alone so that doctors who understand what we have can get on withhelping us instead of talk talk talk and no further forward.

Mithriel

 

[usedtobeperkytina]

How can they study Incline Village outbreak, name that illness CFS, then, when studying it, say the people in the study, including some from the Incline Village outbreak, have something else besides CFS. They defined those people in Incline Village as having CFS. But now they say they don't, they and the others in the WPI have a neurological condition?

The whole CDC CFS program started with Incline Village. If those folks, and the others in WPI study have something else besides CFS, then why isn't CDC looking into that? What is it called? If it is Myalgic Encephalomyelitis, then how is CDC doing on studying that? When was the last study published by the CDC on ME?

Tina