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

[Valentijn]

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'd say this is highly unlikely. However if you read the list of symptoms used to diagnose anxiety, there is nearly 100% overlap with the symptoms of dysautonamia. The one symptom which is somewhat unique to anxiety is actually feeling anxious. 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. Similarly, having undiagnosed dysautonomia is likely to result in some anxiety when it hits, though the anxiety would be following the associated symptoms, not triggering them.

It's sloppy psych diagnostics, not a high rate of co-morbidity.

(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).

Nice try, leetle Care Bear!

 

[MeSci]

The requirement for large sample sizes in phase 3 trials is not necessarily to demonstrate efficacy, it is to demonstrate safety. The most efficacious drug is not so great if it kills one in two hundred people and you need decent sample sizes to show with some statistical confidence that it doesn't. We don't have that problem as the safety can be proven with other Rituximab trial data.

Is that necessarily the case? Aren't people with different illnesses sometimes differently susceptible to harm from the same drug? PwME in particular are hypersensitive to some drugs (and indeed supplements and foods). (I suffered near-fatal hyponatraemia from an ACE inhibitor.) Although I suppose if you combine data from large trials on other illnesses and small or at least reasonable-sized trials on ME, especially if there are several, this may suffice?

 

[MeSci]

Moreover, it seems unlikely that fatigue is mediated the same way in all the different diseases it occurs in - TB, flu, heart failure, cancer, MS, marathon running.

It's official - marathon running is a disease!

 

[Woolie]

The object of the research is to answer the hypothesis that the symptoms of CFS/ME relate to maladapation in brain responses, and are maintained by abnormal inflammatory responses.

Clearly if this hypothesis was proven, it would be consistent with the WHO’s view that CFS/ME should be considered as a primary neurological (ie, brain) disorder.”

This last bit gives away a lot! It reveals that the study predicts "maladaptive brain responses" in PWMEs. (NOT nornal responses to actual inflammation).

I suspect this would not be interpreted as evidence for a "neurological" disorder (not in the usual sense of the word). Just a maladaptive response to normal stress/normal physical sensations. Pretty much in line with current BPS thinking... and most likely correctable only through CBT/antidepressants.

Hope I'm wrong. But stay skeptical until you have reason to think otherwise.

 

[MeSci]

Incidentally, one of the poster presentations at Newcastle covered the cinical trial of Rituximab in primary biliary cirrhosis:

Hey - I like 'cinical trial' - I think it would be a good term for describing trials like PACE! (OK - may need to correct the spelling...)

 

[Jonathan Edwards]

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.

I am not intending to turn my back on this case!!

 

[Jonathan Edwards]

It's official - marathon running is a disease!

Actually marathon running has a purely psychological cause but then...

 

[MeSci]

Actually marathon running has a purely psychological cause but then...

What do you recommend - CBT, GET or both?

 

[MeSci]

Comment from UK neurologist, Professor Leslie Findley, on the Edwards et al MRC funded research involving fMRI to investigate the pathophysiology of post-exertional malaise in ME/CFS:

Prof Leslie Findley, medical advisor says: “We are pleased to note that the MRC approved and funded the Sussex Research Study, which will examine simultaneously brain responses using such techniques as functional magnetic resonance imaging, and inflammatory responses in a cohort of people with CSF/ME.

The object of the research is to answer the hypothesis that the symptoms of CFS/ME relate to maladapation in brain responses, and are maintained by abnormal inflammatory responses.

Clearly if this hypothesis was proven, it would be consistent with the WHO’s view that CFS/ME should be considered as a primary neurological (ie, brain) disorder.”

Medical advisor to whom?

According to this page, he has numerous connections with the insurance industry. (It took me a while to work out that the 'they' referred to on the page referred to him.)

 

[Countrygirl]

Medical advisor to whom?

According to this page, he has numerous connections with the insurance industry. (It took me a while to work out that the 'they' referred to on the page referred to him.)

http://www.measussex.org.uk/About-Us-ME-Support-in-Brighton/meet-the-medical-advisors-experts.html

Your answer is to be found in the above link to the Sussex and Kent ME Society, MeSci. He, along with Crawley and Miller, is their medical advisor under the lead of Peter White's colleague, Broughton.

 

[Large Donner]

http://www.measussex.org.uk/About-Us-ME-Support-in-Brighton/meet-the-medical-advisors-experts.html

Your answer is to be found in the above link to the Sussex and Kent ME Society, MeSci. He, along with Crawley and Miller, is their medical advisor under the lead of Peter White's colleague, Broughton.

Ah well that's reassuring, for a bit when people kept linking to Edwards previous work I was getting worried. At least there will be some balance now that the people above are also part of it.

I wish everyone would stop worrying, they are looking at PEM, they said so, so no need for us to get involved. Good old British researchers breaking frontiers. We can all bow out now.

 

[MeSci]

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.

Shhh...some people will just claim that this symptom is evidence that we are neurotic...it's just extreme anxiety (and it certainly feels like it - but it isn't!).

 

[SOC]

Sigh....
Could y'all maybe take a step back and stop funding "ME" researchers in the UK until you can get these BPS screwballs out of the loop? I know you want something good to come out of the UK. We all do. But all that's really happening is more and more damaging so-called ME research that has nothing to do with our condition is getting into the published research base. It's doing more harm than good. Take a break. Fund the Griffiths U(or wherever they are now) folks in Australia, or Hornig and Lipkin, or the Stanford folks, or Mella and Fluge -- somebody who actually knows something about ME and isn't trying to cover ridiculous BPS theories with a thin veneer of fake biomedical research.

As a patient community, we've only got a limited amount of energy (and funds). I'm discouraged at how much of that limited energy we have had to put towards fighting the "ME research" coming out of the UK. Think how much further along we could be if 1) Wesseley, White, Crawley, and the rest of BPS crew weren't being funded to poison the minds of the world against us, 2) the energy we spend refuting their horrid nonsense was spent on positive advocacy, and 3) the money spent on their garbage research was spent on something that moved the knowledge base into the future instead of back 100 years.

We all need a break from this crap and the only way we're going to get it is if you stop funding people who know jackshit about ME and whose minds are poisoned by the BPS propaganda.

 

[Large Donner]

Sigh....
We all need a break from this crap and the only way we're going to get it is if you stop funding people who know jackshit about ME and whose minds are poisoned by the BPS propaganda.

The problem is they fund themselves. They are in all the high places and in with all the "right" people. They write all the scripts in advance too. The BPS school are on the payroll, the payroll funds everything and the job of those on payroll is to maintain the status quo. It wouldn't surprise me one little bit if the whole MRC thing was a psy op set up by them.

People were under the impression that real ME advocates had instigated the MRC project and some BPS people where invited along to make them look foolish and out of date. Its possible the whole operation was played out the other way around.

That's how a lot of propaganda works. Its also a way of claiming the overall project was supported by the patients and the patient groups. People who run government policy don't stop running it when they are still involved.

This time though they are going to make it "definitive", the answers will claim to be biomedical and major breakthroughs.

By the way people shouldn't think this cant happen in all the US based projects.

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.

With the current climate on austerity and the attack on disability benefits the government is never going to give up the BPS model. Its roots are purely political and they are the politicians in power. They are not going to let some science get in the way of their politics and politics is corporatism now whether we like it or not. One and the same.

 

[Hutan]

In support of @SOC's points above,

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.

http://www.abc.net.au/radionational/programs/allinthemind/imaginary-illness/6847086
(You can make comments - there are some good ones there).

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).

The point of my post though is that when the interviewer asked what was actually going on to cause these illnesses, O'Sullivan noted that the lack of adequate explanation is often a stumbling block in getting patients to accept their illness and get treatment. 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.

I'm sure to people who don't spend their days reading and thinking about these things, the reference to fMRI came across as authoritative evidence supporting her view. Whereas I think the evidence base from fMRI on psychosomatic illnesses at this point in time is thin and questionable. O'Sullivan clearly realises the power of fMRI evidence in persuasion.

As @SOC says, we all have better things to do than counter the spin that arises just from the existence of this trial, let alone the results.

 

[Hutan]

Your answer is to be found in the above link to the Sussex and Kent ME Society, MeSci. He, along with Crawley and Miller, is their medical advisor under the lead of Peter White's colleague, Broughton.

Ah well that's reassuring, for a bit when people kept linking to <Mark> Edwards previous work I was getting worried. At least there will be some balance now that the people above are also part of it.

I am not intending to turn my back on this case!!

I wonder if the study managers would agree to someone like @Jonathon Edwards being an advisor. It should be a funded position of course but there seems to be plenty of funds. It needs to be someone clearly coming from the 'ME is a physical illness camp' and with enough professional experience and standing to be able to contribute and be listened to.

The study managers would benefit by ensuring their studyand resulting report is not full of holes that the ME community will leap on and by ensuring the patient community gets accurate information about the study, not rumours. Perhaps if the study is demonstrably well run and it turns out the only possible conclusion is that we are a bunch of deluded psychosomatics, then we will accept that result.

If the study is clearly very biased, the advisor could resign, which would make a powerful statement about its worth.

Given the raging controversy in the UK, especially with the expensive PACE trial so comprehensively discredited, perhaps the leading ME advocacy group with a biomedical stance (and I don't know which group that is - lots of acronyms that sound similar and I'm in Australia and new to all this) should be insisting that there is a funded advisor on all government funded studies involving ME/CFS patients, with the advisor taken from an approved list of qualified people. If the BPS proponents feel sure of the quality of their hypotheses and research, I can't see why they would object. It wouldn't be a big cost versus the potential benefit to them.

 

[lansbergen]

it turns out the only possible conclusion is that we are a bunch of deluded psychosomatics, then we will accept that result.

Deluded psychomatics according to whom?

 

[Hutan]

Deluded psychomatics according to whom?

What I'm saying is that if there is a number of very well conducted studies finding that undue attention to our bodies and symptoms along with a mode of thinking that jumps to conclusions is the cause of ME, then I would have to accept that. I can't imagine that ever being the case. It doesn't fit with the experience of my family or those of others I have heard about.

Nevertheless, if the BPS proponents want their research to be accepted by patients, the first step is making their research unassailable and free from bias. Taking on an advisor who is not aligned with the BPS theories for ME to voice the criticisms we would make, before the mistakes are made would be a good start.

I'm not at all in favour of this fMRI study being done by these people who appear to have such contempt for people with so-called functional disorders and ignore any evidence contrary to their point of view. But if it is going to happen, and it will, what can we do to minimise the chances of faulty findings being used to make PWME's lives more difficult?

 

[lansbergen]

hat undue attention to our bodies and symptoms along with a mode of thinking that jumps to conclusions is the cause of ME

If that was the case how is it then possible one improves with being very alert for symptoms and rest when they appear?

Who jumps to conclusions the patient or the psychs?

 

[Woolie]

O'Sullivan clearly realises the power of fMRI evidence in persuasion.

Let's not be fooled by it! Amen!