UK Research Collaborative Conference in Newcastle: 13th - 14th October

[user9876]

If it does I would have thought we would have a better test than a 2 day CPET, for two reasons. Firstly, however objective it might seem, there remain queries about subjective influences on the CPET result - at least there are people hard to convince it is cast iron.

There is another reason why the CPET test is bad. I think there is quite a good chance it will bring a relapse.

 

[Large Donner]

There is another reason why the CPET test is bad. I think there is quite a good chance it will bring a relapse.

Don't they have to put people through a state of exertion in any test to measure PEM though?

 

[Large Donner]

I


And I think it would be extremely difficult to voluntarily make your fMRI light up as it does for typhoid vaccine if you just had strange beliefs about how you feel.

One more thing on this point, if there are any issues to do with where the cohort is being selected from and supplied by there may be no response on fMRI or perhaps one that only matches a deconditioned cohort.

Then if fMRI is considered "more objective than the the two day CPET test" where are we left?

 

[Bob]

Secondly, as I understand it brain fog is more important than not being able to run on a treadmill. I have colleagues who can barely walk or are in wheelchairs who carry on full time as hospital consultants. As I read it PWME cannot hope to do that because of symptoms much more under the 'sickness behaviour' (not a term I like much) umbrella. And I think it would be extremely difficult to voluntarily make your fMRI light up as it does for typhoid vaccine if you just had strange beliefs about how you feel.

I don't think that this comment affects the main thrust of your argument but I just wanted to note that it's not a safe assumption that brain fog is a more disabling symptom (in terms of ability to work, for example) than an inability to do physical work. Although we don't need to run on treadmills in everyday life, many of us can't even put enough energy out for even basic self-care. At my worst levels of illness, I aspired to being in a wheelchair. Even now, being able to leave the house and spend all of a working day in a wheelchair is infinitely beyond me. I can't even sit up in bed long enough to type much on one go. These are the kind of fatigue/PEM issues that keep us out of the workforce.

But I think I might be taking your comment out of context.

I would agree with Jonathan that a loss of physical function, by itself, would be much easier to deal with than all the combined symptoms that count as "sickness behaviour" (e.g. a combination of some or all of: cognitive issues, physical/mental exhaustion, pain/inflammation, circulatory issues etc.) Jonathan is comparing uncomplicated physical disability with the sickness response that we experience. I used to say that if I had the exhaustion but without the brain fog, then I would have a much better quality of life. (But now I have loads of complications.)

 

[Sasha]

I would agree with Jonathan that a loss of physical function, by itself, would be much easier to deal with than all the combined symptoms that count as "sickness behaviour" (e.g. a combination of some or all of: cognitive issues, physical/mental exhaustion, pain/inflammation, circulatory issues etc.) Jonathan is comparing uncomplicated physical disability with the sickness response that we experience. I used to say that if I had the exhaustion but without the brain fog, then I would have a much better quality of life. (But now I have loads of complications.)

I think it depends what symptom is causing the loss of physical function - and the "sickness behaviour" symptoms can do that. As you point out, they included physical exhaustion but in PWME that's physical exhaustion to the point where you don't have the energy to clean your own teeth. Whereas someone who is in a wheelchair solely because their legs don't work has the energy to move their arms, type on a keyboard, get out of the house, all that kind of stuff.

The balance of physical/cognitive disability is going to vary from one PWME to another but I just wanted to make the point that with a PWME who is at the severe end, we're talking about much more comprehensive physical disability than is implied by simply being confined to a wheelchair by some structural problem. It's more a case of being confined to a wheelchair and then having your batteries removed so that you can't move.

 

[Jonathan Edwards]

I guess my thought was that if you could actually DO a meaningful CPET test physical exertion might not be the worst part of your problem - sort of catch22.

Also, although the CPET results in ME patients were statistically different I think there was significant variation and maybe even different patterns so some people even if they experienced PEM would be told there CPET was fine and that does not seem 'a robust measure of PEM'.

 

[charles shepherd]

Just to say that I'm now opting out of this very interesting discussion on some of the content and outcomes from our RC conference in Newcastle for the next three days.

Am off to Edinburgh in the morning for the ME/CFS meeting on Saturday.

Completely off message: On the way home I'm going to see - 'catch the wind' - Donovan in Bristol. Had a chat with him at Glastonbury this year where he had been playing on the Acoustic Stage. Michael Eavis was there as well.

Some will remember Donovan from the Flower Power 60s………

 

[Gijs]

I guess my thought was that if you could actually DO a meaningful CPET test physical exertion might not be the worst part of your problem - sort of catch22.

Also, although the CPET results in ME patients were statistically different I think there was significant variation and maybe even different patterns so some people even if they experienced PEM would be told there CPET was fine and that does not seem 'a robust measure of PEM'.

I have done a good repeated CPET test with significant results like low Vo2max and abnormal low anaerobic threshold. In ME the fatigue is a sort of abnormal hyperadrenal state. I always wonder what can cause a hyper adrenal reaction for such a long time days, weeks, months even years. It feels like the body can't relax anymore. You feel the same if you run a marathon at the moment you finish. I don't know any disease with this type of reaction.

 

[Sidereal]

Neil Harrison is a co-author on a neuroimaging study of POTS published in March 2015.

http://journal.frontiersin.org/article/10.3389/fnins.2015.00034/full

The paper is hardcore psychobabble and neurobabble. To give you a taste of the kind of high-quality work we can expect from Harrison and his associates on the ME neuroimaging study:

Our data replicate previous findings of an increase in state anxiety and depression in PoTS patients and additionally demonstrate an increase in neurotic personality traits in this population. These findings provide empirical support for clinical observations of the “emotional style” of PoTS patients which we hypothesized may originate in structural differences within brain regions implicated in autonomic control and emotional arousal.

 

[Large Donner]

Neil Harrison is a co-author on a neuroimaging study of POTS published in March 2015.

http://journal.frontiersin.org/article/10.3389/fnins.2015.00034/full

The paper is hardcore psychobabble and neurobabble. To give you a taste of the kind of high-quality work we can expect from Harrison and his associates on the ME neuroimaging study:

"Our data replicate previous findings of an increase in state anxiety and depression in PoTS patients and additionally demonstrate an increase in neurotic personality traits in this population. These findings provide empirical support for clinical observations of the “emotional style” of PoTS patients which we hypothesized may originate in structural differences within brain regions implicated in autonomic control and emotional arousal."

Functional illnesses are mental illnesses and as all illnesses affect function all illnesses are mental this is because we started of by saying an illness was psychogenic before investigation so we selected people with organic illnesses to prove their is no such thing.

 

[Hutan]

There's the possibility that a real difference found in fMRI between PWME and healthy people is spun as evidence of a functional disorder.

But @Large Donner's point is worth highlighting -

if there are any issues to do with where the cohort is being selected from and supplied by there may be no response on fMRI or perhaps one that only matches a deconditioned cohort.

If the trial participants are poorly selected (and this seems quite likely given the people and organisations involved), then there may be no particular result or an entirely incorrect result. Either could seriously hinder progress on understanding ME.

If reputable ME/CFS organisations are going to support this study, can they be involved to ensure that the trial participants actually have ME?

 

[charles shepherd]

There's the possibility that a real difference found in fMRI between PWME and healthy people is spun as evidence of a functional disorder.

But @Large Donner's point is worth highlighting -



If the trial participants are poorly selected (and this seems quite likely given the people and organisations involved), then there may be no particular result or an entirely incorrect result. Either could seriously hinder progress on understanding ME.

If reputable ME/CFS organisations are going to support this study, can they be involved to ensure that the trial participants actually have ME?

My understanding is that participants will have to have Canadian criteria ME/CFS to take part

The only person who can ensure that a participant has ME/CFS, according to which definition is being used, is going to be a physician.

If a charity is going to be involved in patient selection, which is sometimes the case, then the best it can normally do is to say that there person has a diagnosis confirmed by a reputable physician.

One exception is the ME/CFS Biobank where we know that all participants have had a very thorough clinical assessment from a physician and we know which diagnostic criteria they conform to: Fukuda, Canadian….

 

[charles shepherd]

Functional illnesses are mental illnesses and as all illnesses affect function all illnesses are mental this is because we started of by saying an illness was psychogenic before investigation so we selected people with organic illnesses to prove their is no such thing.

The idea that a functional disorder must have a psychiatric or psycosomatic explanation is deeply flawed once you widen the net and include a whole range of conditions where there is a disturbance of function rather than anatomical structure

One example would be a range of blood vessel disorders - Raynaud's, acrocyanosis, erythromyalgia - where symptoms are provoked by changes in temperature:
http://www.ncbi.nlm.nih.gov/pubmed/20186674

The bottom line here is that the cause of many functional diseases remains uncertain or unexplained

Please note that I am not advocating that ME/CFS should be classified as a functional disorder - because there is some evidence of structural abnorrmalities in both skeletal muscle and the central nervous system

Back to packing....

 

[Large Donner]

The idea that a functional disorder must have a psychiatric or psycosomatic explanation is deeply flawed once you widen the net and include a whole range of conditions where there is a disturbance of function rather than anatomical structure

One example would be a range of blood vessel disorders - Raynaud's, acrocyanosis, erythromyalgia - where symptoms are provoked by changes in temperature:
http://www.ncbi.nlm.nih.gov/pubmed/20186674

The bottom line here is that the cause of many functional diseases remains uncertain or unexplained

Please note that I am not advocating that ME/CFS should be classified as a functional disorder - because there is some evidence of structural abnorrmalities in both skeletal muscle and the central nervous system

Back to packing....

POTS is not listed as a functional disorder neither is ME. Do you have any reservations about these people after seeing all the links people have posted on their previous work and who they cite?

What do you make of these verbal gymnastics on POTS by Harrison who will be involved with Edwards in the MRC ME project....

Sidereal said:
http://journal.frontiersin.org/article/10.3389/fnins.2015.00034/full

The paper is hardcore psychobabble and neurobabble. To give you a taste of the kind of high-quality work we can expect from Harrison and his associates on the ME neuroimaging study:

"Our data replicate previous findings of an increase in state anxiety and depression in PoTS patients and additionally demonstrate an increase in neurotic personality traits in this population. These findings provide empirical support for clinical observations of the “emotional style” of PoTS patients which we hypothesized may originate in structural differences within brain regions implicated in autonomic control and emotional arousal."

 

[Hutan]

Neil Harrison is a co-author on a neuroimaging study of POTS published in March 2015.

Our data replicate previous findings of an increase in state anxiety and depression in PoTS patients and additionally demonstrate an increase in neurotic personality traits in this population. These findings provide empirical support for clinical observations of the “emotional style” of PoTS patients which we hypothesized may originate in structural differences within brain regions implicated in autonomic control and emotional arousal.

Your points in defence of the trial are persuasive @Jonathan Edwards but giving these people research funds is just as fraught as giving racists money to investigate reasons why people with brown skin are more likely to be imprisoned than people with white skin. Maybe, if you keep a close critical eye on them, they will come up with something valid, but as soon as your back is turned, their biases will affect their conclusions and maybe even their data.

Their contempt for patients and blinkered faulty reasoning is truly remarkable.

I know I'm preaching to the choir here but just in case Neil Harrison and his friends read this,
re POTS patients being neurotic, being clinically observed to have an emotional style and being more anxious and depressed:

• POTS causes a lack of oxygen to the brain; this can cause an adrenalin surge which can cause feelings of anxiety and panic;
• Case stories of people with POTS that I have read and my own experience suggests that people were functioning normally prior to developing POTS;
• Faced with a researcher who clearly thinks you are neurotic and/or a series of doctors who think you would be fine if you just calmed down and thought differently, it is pretty easy to come across as neurotic and anxious;
• If you are told enough times that your faulty thinking is the cause of your problem, you may believe it and fill out questionnaires accordingly;
• most POTS patients are female; there are studies showing that doctors are more likely to diagnose females with anxiety and depression. No doubt some doctors would automatically assume they also have an 'emotional style';
• POTS can cause a radical change in lifestyle that is difficult to cope with. Given the losses, it isn't surprising that a POTS patient has feelings of sadness or even becomes depressed.
• Measures of depression derived from questionnaires often can not distinguish between the results of having POTS and true depression (e.g. no longer doing things that used to give you pleasure, no longer socialising as much as you used to)
• The fundamental problem is one of getting the cause backwards. POTS can cause anxiety and depression or at least appearances of these states. There is no need to assume anxiety and depression causes POTS.

 

[SOC]

My understanding is that participants will have to have Canadian criteria ME/CFS to take part

Yes, but do the people making the assesment actually know how to properly apply the CCC?

I have a great deal of concern when people who are not experienced ME/CFS clinicians identify patients as having PEM. Very, very few doctors understand what PEM is. They will diagnose PEM when they see exercise intolerance or simply more-than-expected fatigue after exercise. Do any of the doctors in this study know enough about ME (not chronic fatigue) to be able to properly apply the CCC? Can they distinguish between pure OI/POTS and ME/CFS? Can they distinguish between generalized fatigue in which patients are more fatigued after exercise (even healthy people are more fatigued after exercise) and ME/CFS? Do they understand that an increase of symptoms after exercise does not mean simply more fatigue after exercise. I highly doubt it.

My guess is that they'll use their same old fatigue cohort and claim the cohort meets the CCC to appear more credible. They may even convince themselves they are legitimately selecting CCC patients, but I'll be surprised if they throw out candidates because they have post-exercise fatigue but not PEM.

I'm betting it's all smoke and mirrors. Again.

 

[Stuart]

How do they explain the 30%+ of the population with mild type III Ehler-Danlos (EDS)? Genetic collagen defects are 'anxiety disorders?!?'

Cart before the horse, OI / POTS episodes cause fight or flight as blood pools in legs (venous trapping) as the valves can't close completely to prevent gravity back flow.

You may sweat, begin to shake, feel nervous, not knowing why, it may look like anxiety attacks, but it is the blood pooling in your extremities. Reduced supplies of oxygenated blood flow to brain, lungs, organs sets up adrenal surge to get heart racing to make up the losses. You are woozy and your heart is pounding. But it is Not an anxiety attack. It had no other basis other than an inherited collagen defect.

Another symptom may be pre-syncope upon standing with loss of balance and whiteout vision, is this also an 'anxiety disorder?'

 

[Esther12]

I've not been able to keep up with this thread, or read the things people are linking to, so may be misunderstanding their points, but it could be a genetic predisposition towards something like POTS also means that someone has a greater chance of a genetic predisposition towards some form of anxiety.

I think that we have good reason to be cautious of any research which could be used to justify manipulating patients, as associations with any sort of mental health problems often are, but also that there's a danger that could lead to us trashing claims that are reasonable.

(I think that I'm out of this thread now - not able to keep up with it and Tuller news. Sorry if it seems that I'm being rude, posting into a heated discussion and then running off).

 

[Stuart]

There has never been any link to any higher rates of mood or anxiety disorders with any form of Dysautonomia!

This framing of these as an outcome of anxiety is absurd and derived out of whole cloth.

Do cancer patients have more bouts of anxiety than healthy controls? Uh, well yes! So cancer must be due to anxiety! Or genetic dispositions to cancer must have genetic dispositions to anxiety, or vice versa!

This is a logical fallacy. There isn't even correlation, but even if you said there was correlation (gee someone very sick might get a bit more anxious!), that is not causation!

Do some reading before you do some damage with conjecture based upon nothing. We have enough problems with bad ME studies and don't need to spread bad information on other medical topics, many that are conditions that ME may have as well.

http://dinet.org/

 

[SOC]

This is a logical fallacy. There isn't even correlation, but even if you said there was correlation (gee someone very sick might get a bit more anxious!), that is not causation!

Sigh, yeah.... These folks apparently never got a decent science education because they persistently refuse to recognize that correlation is not causation, no matter how many times we point this out to them. Their science education also seems to lack other basics like hypotheses need to be falsifiable and testable, that a hypothesis must be proven, not used to explain the data, and many, many very basic scientific principles.

Where did these people go to school? Is the science education that bad there, or did all these people sleep through all their basic science classes?