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

[Wildcat]

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The quote above (posted by @charles shepherd ) from Professor Leslie Findlay about the Edwards et al MRC funded research involving fMRI to investigate the pathophysiology of post-exertional malaise in ME/CFS ("The Sussex Research Study") ........is from the website of the Sussex CFS Society (Leslie Findlay is one of their medical advisors, along with Dr Alistair Miller, formerly of AFME, and Dr Esther Crawley)
http://www.measussex.org.uk/Latest-News/

The Sussex CFS Society Charman, Colin Barton writes on the site: Colin Barton, Chairman says, “We are delighted to be able to assist with this most important study.”



HOW exactly is the Sussex CFS Society "assisting" with the Edwards et al MRC funded research?

By providing participants?

And why? The Sussex CFS Society is a top-down organisation, that has always fiercely defended and promoted the NICE Guidelines, the CBT/GET Clinics, PACE, and the BACME Guidelines. Any Sussex Society member, or other patients who disagree, are silenced in no uncertain terms.


A survey of Sussex CFS Society members by Brighton and Sussex Medical School found that 44% of respondents said that Lightning Process was the treatment/therapy that helped them the most.

'Brighton and Sussex Medical School and the Sussex & Kent ME/CFS Society survey CFS/ME ‘LP most helpful approach’.
http://lightningprocess.com/wp-content/uploads/2013/12/Kent-Sussex.pdf


Yoga and Bass playing are amongst the weird 'cures' that Sussex Society members have claimed 'cured' their ME.


Severely physically sick ME sufferers in Sussex are simply abandoned by that so-called patient Society, with its perpetual mantra of "Things are getting better", its refusal to hear about medical mistreatment of ME sufferers in Sussex, and its dictatorial promotion of NICE/CBT/GET PACE/BACME, both locally and nationally. http://www.measussex.org.uk/Latest-News-About-ME-and-CFS-|-M.E-C.F.S-News/new-guidelines-august.html

Many ME patients join the Society and then leave in despair at the Sussex CFS Society's NON representation of Myalgic Encephalomyelitis sufferers.


The involvement of the Sussex CFS Society in the MRC funded Edwards study is Not reassuring to the UK ME Community, who are familiar with the antics of the Sussex CFS Society over the years.

Its deeply worrying.

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[Hutan]

Given Dr Mark Edwards was an author of the paper 'A Bayesian account of hysteria' that states that:

1. CFS is a subset of 'functional (i.e. psychogenic) motor and sensory sensations' (FMSS ) (page 6) ;

2. FMSS is a disorder of abnormal expectations and misdirected attention (page 5);

3. Patients with FMSS have a body-focussed attentional bias....The mechanism of somatoform conditions is 'the repetitive reallocation of high-level attention on to symptoms' (page 5) - i.e. we think too much about ourselves;

4. Introspective people are more likely to experience somatic symptoms (page 5) i.e. we think too much about ourselves and we don't like socialising with people;

5. Cultural beliefs can affect what particular FMSS results (page 6) i.e. we get together on internet fora and jointly work out what symptoms we will have;

6. Negative affect is very common in patients with personality disorders who are in turn at a higher risk of developing FMSS (page 7); i.e. we are more likely to have a personality disorder than a healthy person, certainly when in the proximity of patient-blaming psychologists (and neurologists) (well, any medical specialist);

7. Patients with somatisation disorder ..have cognitive biases towards retaining information relating to illness (page 7); i.e. we actually bother to research our illness, read scientific papers and remember relevant information because the doctors we see don't and it's our lives that are passing us by while we stay sick;

8. Patients with somatisation disorder have ... catastrophic thinking about symptoms (page 7); i.e. we have a much more informed idea about the likelihood of the course of this illness

9. The jumping to conclusions' bias is a well-known tendency of patients with delusions... We have recently demonstrated that the 'jumping to conclusions' bias is also present in patients with FMSS, consistent with a tendency to overweigh evidence; a tendency that could lead to abnormal inferences about sensations during a physical triggering event' (page 7); i.e. well, that is actually pretty clear.

10. Conclusions are drawn from one (yes, one) patient who has undergone a functional MRI about parts of the brain that are over-activated

11. It is noted in passing that not all imaging studies of motor symptoms find evidence of increased prediction errors in higher parietal sensory areas (page 12) but this is not explored further.

12. It's possible to have a real illness with a 'functional overlay' i.e. you are over-reacting (and so the CBT industry extends its coverage to all sick people who complain too much about their symptoms).

And given that Dr Mark Edwards presented slides at the CFS/ME Research Collaborative that seem entirely consistent with the content of the hysterics paper;

And given that there seems to be much room for interpretation of fMRI images at this point in time;

And given the PACE study has been so harmful and this new study seems to be starting with similar psychosomatic assumptions;

Could someone explain to me why any patients with ME should go anywhere near the new study and offer up their brains for imaging?

 

[Large Donner]

Could someone explain to me why any patients with ME should go anywhere near the new study and offer up their brains for imaging?

Because as usual there are some so called advocacy groups who are trying to drive us away from ME through the Syndrome of CF, and into Stockholm to yet another syndrome.

We are all supposed to just whoop and cheer "cos they are doing some tests", which will be interpreted as ..........

and we are supposed to ignore all previous writings that are visible for all to see in all of the publications our new Messiahs have partaken in.

We must not have our antentas up, we must not listen to our radar. We must just ignore all "that other stuff they said before about personality disorders and psychogenic disorders". We must just obey and worship.

We need to be protected from ourselves and stop being negative about British research or we will just get radicalized online. Infact if we keep going online to track what researchers have done in the past we should have the internet turned off on us.

It time to censor the internet and we should all be willing to let the authorities collect all our data and communications.

We need to give up our freedoms to protect our liberties.

Stupid little internet allowing us to share ideas and pass on information and previous writings of researchers, its so damn dangerous. It's obvious the Government should be in charge of the internet.

The Messiah is here funded by the UK government all hail the Messiah all hail the new Messiah.

Blind faith is where its at.

This is all about a new type of research..... biomentical. Its what we have been begging for for years isnt it??

If you don't want it you are not with us you are against us and you are just a bunch of conspiracy theorists and radicalists.

You are stopping other people from getting treatment. This should be illegal.

All hail the MRC 3 new Biomentical studies!!

 

[Valentijn]

Could someone explain to me why any patients with ME should go anywhere near the new study and offer up their brains for imaging?

It's the only way to get doctors following psychosomatic guidelines to rule out MS?

...

On a more serious note, I'm not sure why certain parties cannot accept that many of us are unwilling to get excited about a new psychobabbler on the scene just because he's trying to find out how the brain is involved in our presumed psychosomatic disorder. Maybe they're upset because they heard the sales pitch, didn't do their research, and jumped on board without realizing it's another quackfest? Or are they just too eager to have some research proposals to present to make it sound like something positive is happening?

In any event, they should take it as a learning experience. Hold back the glowing endorsement until they do their homework, or better yet, ask for patient feedback and we'll do their homework for them.

But we're not going to assume that a quack has changed his modus operandi and beliefs simply because he's putting the right spin on his research when talking about it at an ME function. And I'm sick of the suggestion that we're not giving quacks a (2nd? 3rd? 10th? 100th?) chance. They had a chance, and that was in their previous psychobabble or neurobabble papers where they extensively documented their ignorance and prejudice regarding ME/CFS.

 

[Snowdrop]

Thank you @Wildcat for providing that information. We people with ME are sometimes so desperate and we get optimistic over the slightest thing despite past disappointments. Having experts be so supportive will make it that much more horribly deflating for us when the time comes for the study to be published and it is a steaming pile of crap. Not just that but even if the study did point to something interesting this whole exercise is to be seen as biomedical while still being in a position to put a psychosomatic treatment spin on whatever results are obtained.

It's not science it's politics. And you can't be reasonable and play nice hoping for some small scrap to be useful.
Many of us have been ill a very long time--and for those who aren't they have the possibility of being so if nothing changes.
For us every single day is a day too long. Waiting for some incremental shift in the climate of UK research while the politics remains is bloody frustrating. The NICE guidelines inform many socialised medicine's countries policies toward ME. It's the 'gold standard research'. It's also a lie of course.
I wonder if Karina Hansen's situation might actually not be what it is if not for PACE. I agree with what Valentijn has to say. And I don't think this research is going to upend anything with regard to PACE ruling how ME is treated in the UK.

It would be cruel to get people's hopes up and then have them dashed when the research turns out to be used as more spin.

 

[jimells]

It took me many years to make the connection with prior activity, let alone predict it! I think I had to read it or hear it somewhere before I 'got it'.

I used to think that my horrible migraines were caused by the weather, and it turns out I was right, but not for the reason I came up with. Since the symptoms came on the day after bad winter storms, I assumed they were caused by the big increase in barometric pressure that follows the storms. Many migraine sufferers report that barometric change triggers their headaches, but usually when the pressure drops, not when it increases.

After I found this forum I realized that what actually happens is: bad storm -> shovel snow -> PEM

Another fine example of "correlation is not causation".

 

[Wildcat]

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Further to my last post (#580) 'HOW exactly is the Sussex CFS Society "assisting" with the Edwards et al MRC funded research?'

Previous exploits of the Sussex CFS Society and its Chairman Colin Barton do not inspire confidence in their involvement with any further ME research.



2009: Sussex CFS Clinic Clinical Lead Dr Mike Broughton and Phil Parker, and the Sussex CFS Society Chairman Colin Barton, discuss Lighting Process and Lightning Research at the Swallows Retreat Lightning Process Centre in Sussex in March 2009.


https://web.archive.org/web/20090715072135/http://www.swallowsretreatanswersme.co.uk/home/2009/3/1/phil-parker-at-swallows.html

Phil Parker at Swallows
Sunday, March 1, 2009 at 8:26PM

‘Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty guests and users of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda's Lightning Process participants at Swallows’


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No such Lightning Trial was ever published. But Dr Broughton did recommend Lightning Process to Sussex CFS Clinic patients during his time as Clinical Lead of Sussex.

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[John Mac]

is from the website of the Sussex CFS Society (Leslie Findlay is one of their medical advisors, along with Dr Alistair Miller, formerly of AFME)

Probably the reason why Miller left Action for ME in the first place so he can supply non-ME patients for the study.

 

[Wildcat]

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@John Mac wrote "Probably the reason why Miller left Action for ME in the first place so he can supply non-ME patients for the study."


Exactly! Well, I'm not sure that's why he left AFME ..... but with Alistair Miller and Dr Esther Crawley amongst the Medical advisors of the Sussex CFS Society, and the Sussex Society's full and vocal support for NICE, PACE, BACME, its keeness on Lightning Process, with apparently not a peep of protest from its members..... the ME sufferers have been squeezed out.

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[Esther12]

I'm a bit worried that some people are being too quick to jump to conclusions here.

But also, I've now seen so many times where giving research like this the benefit of the doubt has turned out badly.

Colin Barton's involvement is not a good sign either.

 

[Wildcat]

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What conclusions have been jumped to? The Edwards research is Sussex based (The Sussex Study). The history of the Sussex Society is well illustrated. Why should we have confidence in it?

 

[charles shepherd]

Re Sussex CFS Society: I have no information as to how this Sussex group became or is involved with the new neuroimaging research by Edwards et al

I suspect the main link with Sussex is because of the involvement in the study by Dr Neil Harrision, who is based at the Brighton and Sussex Medical School Clinical Imaging Sciences Centre:
http://www.bsms.ac.uk/research/cisc/

Incidentally, there are other ME/CFS support groups in Sussex, including this one:
http://www.remembercfs.org.uk/index.htm

And I go down and speak at their meetings in Sussex quite frequently

They also belong to a group of ME/CFS charities - Forward ME Group - who meet under the Chairmanship of the Countess of Mar.

This group does not support the NICE guideline and we are talking to both NICE and NHS England in an attempt to get the NICE guideline on ME/CFS removed from the static list and properly revised, especially the sections covering CBT, GET and Pacing

 

[Wildcat]

@charles shepherd Can we clarify exactly what involvement the Sussex Society has with the Edwards Research?

The org Remember CFS is not stated as involved with the Edwards research. Just the Sussex CFS Society.

We know that the ME Association and Forward ME are trying to get CBT/GET removed from the NICE Guidelines as treatments for ME.

But the Sussex Society's history, and its entrenched support for NICE, BACME etc, and the history of the Sussex CFS Clinics ........
the first Clinical Lead of the Sussex 'CFS' Services was Dr Brian Marien, a CBT Expert who had private CBT companies. The second Clinical Lead, a GP, promoted Lightning Process....... makes it a highly inappropriate organisation to be involved in this high profile MRC funded research.
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Edited to add further information.
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[charles shepherd]

@charles shepherd Can we clarify exactly what involvement the Sussex Society has with the Edwards Research?

The org Remember CFS is not stated as involved with the Edwards research. Just the Sussex CFS Society.

We know that the ME Association and Forward ME are trying to get CBT/GET removed from the NICE Guidelines as treatments for ME. But the Sussex Society's history, and its entrenched support for NICE, BACME etc makes it a highly inappropriate organisation to be involved in this high profile MRC funded research.

I'm afraid I know nothing more about the connection to this Sussex group than I've already said above!

I'm about to start preparing everything for my flight to Edinburgh tomorrow for the meeting on Saturday

But I will quickly ask Colin Barton via the MEA Facebook discussion on this research for some further clarification…….

Sorted on MEAF >>>

https://www.facebook.com/ME-Association-171411469583186/

 

[Wildcat]

@Charles Shepherd. Thank you.

http://www.measussex.org.uk/Latest-News/
" Colin Barton, Chairman says, “We are very pleased to be assisting in this important project that has the chance to link the ME/CFS symptom complex to a pathophysiological mechanism.”

 

[Jonathan Edwards]

On a more serious note, I'm not sure why certain parties cannot accept that many of us are unwilling to get excited about ...

I don't know if I am a certain party, but let's say I am, although I am perfectly happy that many members are unwilling to get excited. But my enthusiasm for this project may be a little more devious than it might first seem.

I spent my career totally unimpressed by the popular idea that RA was caused by T cells. It was not until quite late on that I realised that my job was to think up some other idea that would do a better job. So I finally thought it up and it worked. However, the reason my thoughts funnelled the way they did was that the T cell pundits had done so brilliantly in destroying their own hypothesis. Patients were treated with biologics that dropped the T cells to AIDS levels and nothing happened. The T cell microscopists showed there were no T cells there after all - oops! Etc. etc. So I welcome anyone testing a wrong theory - it often works a treat.

And as far as I can see what they are going to do is see if the brain looks different after exercise during PEM in the sort of way it does when people have had typhoid vaccine and cannot think straight when given a task. 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. 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.

And if the researchers find this change and say it is due to 'maladaptation' then Dr Fluge can pop along and say 'great, we will check this before and after rituximab and placebo'. And if it went away with rituximab and not placebo then it would be a very interesting B cell and antibody dependent form of maladaptation (quite hard to spell), often called autoimmunity.

Maybe I am oversimplifying, or misreading the experimental plan, but I think it can only help. When a colleague told me he was trying rituximab in psoriatic disease I said 'great study, it will not work at all' because we knew psoriasis really was a T cell disease. And when they reported no effect at all we knew for sure.

I would give the wrong guys a 100 chances to prove themselves wrong - if that is the scenario. The T cell people have gone on cheating and spinning their results for years but in the end a house of cards is a house of cards. It does need a little nudge to fall down sometimes but there is some nudging going on.

 

[Valentijn]

I would give the wrong guys a 100 chances to prove themselves wrong - if that is the scenario. The T cell people have gone on cheating and spinning their results for years but in the end a house of cards is a house of cards. It does need a little nudge to fall down sometimes but there is some nudging going on.

But until it falls down, a great many idiots in the general population and the medical profession will "oooh" and "aaah" at the very tall and pretty house of cards. And then they have one more excuse to treat us in a very inappropriate and even harmful manner.

I'm all for letting biased, incompetent, and/or fraudulent researchers hang themselves, but ME patients have been suffering for decades in the process and still with no gallows in sight. I'd prefer tying their hands up nice and tightly with that noose now, before they can do more harm, even if it means fewer careers and reputations swinging in the breeze when the cards do come tumbling down eventually.

 

[Jonathan Edwards]

But until it falls down, a great many idiots in the general population and the medical profession will "oooh" and "aaah" at the very tall and pretty house of cards. And then they have one more excuse to treat us in a very inappropriate and even harmful manner.

I'm all for letting biased, incompetent, and/or fraudulent researchers hang themselves, but ME patients have been suffering for decades in the process and still with no gallows in sight. I'd prefer tying their hands up nice and tightly with that noose now, before they can do more harm, even if it means fewer careers and reputations swinging in the breeze when the cards do come tumbling down eventually.

I will do my best to continue nudging.

 

[Sasha]

But my enthusiasm for this project may be a little more devious than it might first seem.

I'm all for that and I like your logic.

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.

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.

 

[Large Donner]

And as far as I can see what they are going to do is see if the brain looks different after exercise during PEM in the sort of way it does when people have had typhoid vaccine and cannot think straight when given a task.

The problem comes in when they claim to find the same downstream response in people with "MUS" and how they explain it. Remember "PWME have no inflammation and no infection.

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.

Yes but Psychogenic explanations don't require voluntary responses they require the notion of the subconscious being faulty. Edwards is well published pushing that very notion.

I would give the wrong guys a 100 chances to prove themselves wrong - if that is the scenario.

Using taxpayers money? Don't you think Bsers have had enough of that especially considering they are often well connected to political and public relation spin machines.

The Pace trial took at least five years. It proved them wrong but not according to themselves, NICE and the mainstream media and there is a deafening silence from the DWP who sponsored the trial.

So if a trial takes, lets say 2 years to run, and its full of BS, falsehoods and spin and we give them 100 goes, in two hundred years we will have some answers.