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

[Hutan]

Who jumps to conclusions the patient or the psychs?

In Edwards' hysteria paper (see one of my posts above), it is suggested that a thinking style that involves leaping to conclusions on the basis of very little data is a predisposing factor for functional illnesses including CFS/ME. Along with the tendency to ignore sensory input that conflicts with prior beliefs.

Yes, it's ironic isn't it. With that reasoning, the BPS proponents should be suffering greatly from functional illnesses.

 

[SOC]

O'Sullivan talked about CFS/ME as being psychosomatic, culturally defined (common in the US, not so much in France) and largely a women's illness (probably because women are abused more often and so have more repressed emotions).

So not only is she a medical bigot, she's a cultural and gender bigot as well... along with being a complete ignoramous where ME is concerned. Nice lady... not.

ETA: This name is going near the top of my list of names to send to the media (when we finally understand ME) as people who abused very ill people for personal gain. I want lots of investigative journalists reading her nonsense, calling her up, and asking her pointed questions.

 

[OhShoot]

If it's supposed to be caused by repressed emotions, shouldn't it be MEN who get it more often?!

 

[Woolie]

If it's supposed to be caused by repressed emotions, shouldn't it be MEN who get it more often?!

Good point, @OhShoot!

Another example: it as been suggested that psychosomatic symptoms might be more common in people with a personalty trait called alexithymia. Loosely translated, this is an inability to recognise common emotional experiences and the physiological states that accompany them (e.g. I know I'm nervous and that's why my heart is racing). Instead, alexithymic people mistake these sensations as actual illness. That is, they "somatise" them.

The problem with all this is exactly what you say: alexithymia is more common in men than women. Yet somatisation is (apparently) more common in women. Big problem!

 

[jimells]

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.

This is exactly what I experienced laying on the Emergency Room bed earlier this week. I felt bad before going to the hospital, but much worse while there, which is what I expected. I even told the doc that I didn't want to go to the ER because I was afraid of being diagnosed with anxiety. He apparently believed what I was telling him, because when I asked for a liter of saline, he said, sure, it won't hurt. An hour later I was able to get up and function again, sort of.

Even after hours of laying down in the ER, if I talked for more than a minute or two, the shaking would start again. My "battery" must've been damn close to zero. I don't think I have a collagen defect, though, "only" ME.

 

[jimells]

But a lot of practitioners are going into "you don't really know how you feel" mode, and telling patients that they're in denial about their anxious feelings.

Oh My God, are you telling us that the babblers are telling patients they are anxious but don't know it? I don't know what to say - it's just too unbelievable. Do they also tell people they are angry and don't know it?

 

[jimells]

One of the other ways to carry out psy ops is to just keep muddying the waters and causing more division so nobody on the outside knows what to make of anything. That way nothing can move forward.

This is exactly why the CDC and fiends keep creating new names and definitions every few years. I think there's over a dozen by now.

 

[jimells]

I've just listened to Suzanne O'Sullivan being interviewed on 'All in the Mind', a regular show about the brain and the mind on Radio National In Australia. This episode was titled 'Imaginary Illnesses'. O'Sullivan is of course the author of 'It's all in your head', a book which includes CFS (and ME) in her list of psychosomatic illnesses.

There was a very long discussion on our forum when this book was released.

However, she referred to fMRI, noting that it is clear that in people with psychosomatic illnesses, their brains aren't working like those of healthy people; different regions of the brain are highlighted.

This is very disturbing. It makes it crystal clear that the psychobabblers are not going to go away quietly and intend to hijack the biomedical research. Thank you Hutan for reporting her remarks.

 

[Valentijn]

Oh My God, are you telling us that the babblers are telling patients they are anxious but don't know it? I don't know what to say - it's just too unbelievable. Do they also tell people they are angry and don't know it?

There are a large number of psych questionnaires where physical symptoms are taken as proof of a mood disorder, and a similar method is used with the DSM as well.

• Elevated heart rate? Breathlessness? Dizziness? Must be anxiety!
  
• Don't do fun things? Feeling exhausted? Can't work easily? Trouble making decisions? Must be depression!
  
• Does the "anxiety" or "depression" come with physical symptoms such as pain or disability? Woohoo, that means a free upgrade to a full-blown psychosomatic disorder!

At the very least these questionnaires should be altered to take the symptoms and limitations of a specific disease into account, but the psychobabblers never really are interested in doing that.

 

[Hutan]

If it's supposed to be caused by repressed emotions, shouldn't it be MEN who get it more often?!

Well you see, the women are repressing the emotions related to being abused. Actually the study by Neil Harrison on POTS patients (more often women) found that they have a more 'emotional style' as observed clinically. So the women (and some odd men too) are repressing some emotions too much and expressing other emotions too much. It's obviously very complicated.

 

[Sidereal]

Well you see, the women are repressing the emotions related to being abused. Actually the study by Neil Harrison on POTS patients (more often women) found that they have a more 'emotional style' as observed clinically. So the women (and some odd men too) are repressing some emotions too much and expressing other emotions too much. It's obviously very complicated.

Hutan, but remember, it's a peculiar emotional style that expresses itself only when you change your body's position to upright.

 

[Snowdrop]

Well you see, the women are repressing the emotions related to being abused. Actually the study by Neil Harrison on POTS patients (more often women) found that they have a more 'emotional style' as observed clinically. So the women (and some odd men too) are repressing some emotions too much and expressing other emotions too much. It's obviously very complicated.

Or it's normal to have adaptive personality changes in response to long term chronic illness. I would behave differently (emotionally) if only I had my life back. The people who determine these things have utterly no conception of how being ill long term affects so many aspects of a persons life
These researchers are like a bull in a china shop they rampage in careless to any more complete picture; that is to say context and made wild declarations based on their clumsy rampage.

And they already have figured out that we fit their pet theory of what troubles us before we are even seen.
I know their tactics and conclusions seems so blazingly ridiculous it can't really be true. And yet--there it is. I don't know what to make of it either.

 

[MeSci]

In Edwards' hysteria paper (see one of my posts above), it is suggested that a thinking style that involves leaping to conclusions on the basis of very little data is a predisposing factor for functional illnesses including CFS/ME. Along with the tendency to ignore sensory input that conflicts with prior beliefs.

Yes, it's ironic isn't it. With that reasoning, the BPS proponents should be suffering greatly from functional illnesses.

Someone else may have already thought of this (I haven't quite caught up yet), but it seems to me that a difference between us and the BPS mob is that we pay attention to what is happening to/in our bodies...

 

[MeSci]

And they already have figured out that we fit their pet theory of what troubles us before we are even seen.
I know their tactics and conclusions seems so blazingly ridiculous it can't really be true. And yet--there it is. I don't know what to make of it either.

Well, one of those assumptions came close to costing me my life in 2007, when my GP/PCP decided over the phone, despite my weak but desperate protestations - that I was having a panic attack (of which I have no history) when it eventually turned out that I was suffering severe hyponatraemia (low blood sodium) almost-certainly caused by the ACE inhibitor I had been prescribed shortly before.

I later found that a friend's mother had died shortly after being told by the same doctor that her symptoms were all in her mind.

Makes me wonder how many people die due to such idiotic and disrespectful decisions. I fear that it may be a lot.

 

[Snowdrop]

Well, one of those assumptions came close to costing me my life in 2007, when my GP/PCP decided over the phone, despite my weak but desperate protestations - that I was having a panic attack (of which I have no history) when it eventually turned out that I was suffering severe hyponatraemia (low blood sodium) almost-certainly caused by the ACE inhibitor I had been prescribed shortly before.

I later found that a friend's mother had died shortly after being told by the same doctor that her symptoms were all in her mind.

Makes me wonder how many people die due to such idiotic and disrespectful decisions. I fear that it may be a lot.

There are moments when I have no words. . . wait for it. . . that is seriously screwed up. It must have been frightening. And it won't change their behaviour one bit to know that happened.

 

[K22]

I do have concerns the Edwards research is going to be used to push cfs into the FND box, its exponents eg Jon Stone already classify it so.

These Youtube videos might be revealing but i am unable to watch them all. In the Jon stone one he puts up a slide classing FM & CFS as FND and this was 2014.

Debate aboit hysteria and. FND

Dr Jon stone FND

As far as i know the treatment for uk FND is very similar to UK cfs, ie CBT/GET, challenge perceived to be unhelpful beliefs such as disease or damage, emphasise potential reversibility without medical treatment & address any stress/psychological disorders which might be contributing. It's classification Is in both neurology & psychiatry & It would be a happy place for cfs to be slotted if you look at things cynically.

I also think we should remember that prof Collin Blakemore who headed the MRC and guided its cfs focus on psychology and rehabilitation instead of biological research, despite the CMO report, and must bear some responsibility for the PACE & FINE trials, (lots of online evidence for that) now 2012, insists this is a brain disorder (see below) so that probably accords with fuzzy FND interpretations. These coincidentally require no change in approach for cfs and also does not recognise it as a multi system disease as the IOM do. .

"As a neuroscientist, Blakemore emphasises that CFS is undoubtedly a disorder of the brain. “But some people make a fierce distinction between neurology and psychiatry, which is deeply offensive to people with mental health problems in general. CFS is probably a constellation of clinical conditions, like schizophrenia or dementia.”

https://secure.jbs.elsevierhealth.com/action/getSharedSiteSession?redirect=http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(12)61972-2.pdf&rc=0&code=lancet-site

The Blakemore quote is from an article supporting Simons Wesselys receipt of the John Maddox award, bravely studying CFS his way, despite opposition.

 

[Bob]

After all these depressing discussions it's worth having a read through Charles Shepherd's review of the conference, to see that it was dominated by biomedical discussions. Also, worth noting that Stephen Holgate's ambition of a 'Grand Challenge' for ME/CFS is a biomedical project, on a large scale...

"Taking forward his plan for a Grand Challenge, and incorporating some of the key points made by Professor Davey Smith about the need to collect ‘big data’ from large cohorts of patients, this will analyse and stratify information on gene expression, immunology, proteins etc in ME/CFS into clinical and pathological subgroups. The Grand Challenge will bring together key stakeholders (researchers, funders, charities) in a meeting that the collaborative aims to hold early in 2016."

 

[K22]

After all these depressing discussions it's worth having a read through Charles Shepherd's review of the conference, to see that it was dominated by biomedical discussions. Also, worth noting that Stephen Holgate's ambition of a 'Grand Challenge' for ME/CFS is a biomedical project, on a large scale...

"Taking forward his plan for a Grand Challenge, and incorporating some of the key points made by Professor Davey Smith about the need to collect ‘big data’ from large cohorts of patients, this will analyse and stratify information on gene expression, immunology, proteins etc in ME/CFS into clinical and pathological subgroups. The Grand Challenge will bring together key stakeholders (researchers, funders, charities) in a meeting that the collaborative aims to hold early in 2016."

Stephen Holgate has been talking about this for a while hasn't he? But only acting on it now. My post above was just in relation to the only medical research funds we have had since late 2011. As far as I remember there will be workshops etc first so it might take some time for actual funding for the big data study to emerge. It will also be interesting to see how broad a net these large cohorts study ie what whole they are attempting to subgroup.

 

[Bob]

Stephen Holgate has been talking about this for a while hasn't he? But only acting on it now.

Yes, he's been talking about it for some time but I'm not sure if it's correct to say that he's only acting on it now. I think he's been working towards it since he set up the collaborative, slowly putting the pieces in place to make it work.

 

[jimells]

"Grand Challenge", "Big Data", and "Large Cohort" means years of pre-study organizing, conferences, meetings, grant applications, etc.

It also means many more years of suffering and dead patients.