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Trudie Chalder - 17July 2017 - Roehampton Child Psychopathology

Londinium

Senior Member
Messages
178
I don't even care if that cure is in fact BPS.

Agreed. It's been portrayed that people object to CBT/GET because it implies they have a mental illness. Personally, I couldn't give a monkeys if my illness was shown to be mental if the proposed therapies worked. My objection, and I suspect most ME/CFS sufferers' objection, is that GET:
  • may be harmful to many more serious ME/CFS patients;
  • diverts research funds and interest in the field in looking at other possible biological causes; and
  • most of all, has been shown to be entirely ineffective at generating anything other than a transient placebo response.
I would be *thrilled* if a research team came forward with strong evidence of a workable treatment, even if the underpinning model was that of a psychological condition. It's the misselling of an entirely ineffective treatment and the knock-on impact of undermining the need for biomedical research that drives our concerns. Not whether this illness is bio, psychosocial or both*.


*though I suspect the theory that an illness is biopsychosocial in nature cannot really be considered a scientific theory at all, as it fails the Popperian criterion of being falsifiable - because all illnesses will contain a biological, psychological and social component. I struggle to think of any illness that couldn't be portrayed as having some BPS element which is why I suspect that even if, say, the Fluge & Mella research demonstrates a strong autoimmune link, BPS proponents will be able to argue that said link doesn't undermine their view that ME/CFS is a biopsychosocial illness. BPS is such an elastic term that it is essentially meaningless. It's as about as scientifically rigorous as when CAM practioners bandy around terms like 'energy'.
 
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MEMum

Senior Member
Messages
440
What a shame I'm on holiday then...
Actually I think I would find it hard to listen to this kind of talk without exploding, screaming or throwing something.

I have thought about going to first day of CMRC conference. So NOT including Crawley as I could not guarantee remaining civilised, but then maybe that's the way to get media attention? No I'm not being serious about the latter.

I know they tweet and recorded most talks from last year, but I thought it could be a good way to get a feel for some people's general approach, as well as some biomedical info.
Is anyone else planning to go, apart from CS?
 

Jo Best

Senior Member
Messages
1,032
Sometime this year the research to confirm Increased Digestive Permeability aka "leaky gut", a quack inspired term that I dislike, will be proven when the research being done by Daniel Vipond at East Anglia University should be published. Then it will take some time to find the cause, a cause that I worked out 4 years ago. When that is complete, progress should be made on CFS and many other illnesses all connected by a bacteria.

The research began in Oct 2013 and was meant to take 3 years so it should of been finished by now. I do not know what is holding it all up. How long can it take to write it all up and publish the results?
Hi Carl, I remember (from the IIMEC10 DVD) Daniel Vipond speaking at the 2015 Invest in ME Conference and expressing his frustration at the length of time it took to get the necessary approvals to begin his study after he started in Oct. 2013. This was the foundation study of the translational biomedical research programme of the Invest in ME Research Centre of Excellence so at least next phases have been underway before the initial paper is published and as a team they have also been working with researchers in other countries.

From the blog published yesterday by @MEMum about the June 2017 Invest in ME Conference:

Daniel Vipond is close to writing up his PhD. (Or at least Professor Carding hopes he is). He has been:
  • Looking at gut inflammation
  • Taking quantitative measurements of IgA coated bacteria.
  • Hoping to separate and sequence the coated bacteria.
There is an increase in IgA production in PwME.

Along with other researchers, such as Maureen Hanson, he has found a reduced bacterial diversity which is similar in people with IBS.

Also..

Fiona Newbury and Ernie Hsieh are studying the Intestinal Virome in ME.

Viruses can also reduce bacterial diversity . They plan to:

  • Define the gut, viral and bacterial populations, and see if this changes with disease progression.
  • Determine if viruses isolated from PwME can influence and kill their bacterial hosts in the gut.
  • Try and develop an animal model in which they can study influences on intestinal and systemic inflammation.
There are technical problems with analysing viral genomes. There is a lack of a good database on viruses. In addition, there are large areas of the genome which are similar in many viruses.

Links for extra info if needed:

From The Quadram Institute website (Norwich Research Park):

The review by the team, published June 2016:
https://quadram.ac.uk/do-the-answers-to-mecfs-lie-within-our-gut/

Simon Carding talking about the research, Norwich January 2017:
https://quadram.ac.uk/mecfs-talks-held-in-norwich/

Simon Carding talking about the research, Brussels March 2017:

The gut microbiota research on IiME Research website:
http://www.investinme.org/ce-gm-projoverview.shtml
 

Kati

Patient in training
Messages
5,497
It may be worth being present to shatter a coffee cup or two.

I'd like to get Peter Tatchell to make a citizens arrest. ;)

I think it is best to tackle the problem with science, not with threats of violence or disruption, especially on a very public forum like this one. The work of Tom Kindlon, David Tuller, the guy in Australia whose name I can't remember have all helped out moving the field forward and uncovered embarrassing truth for the PACEtrial authors and their universities. There are ways to get our point across without violence or threats.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I think it is best to tackle the problem with science, not with threats of violence or disruption, especially on a very public forum like this one. The work of Tom Kindlon, David Tuller, the guy in Australia whose name I can't remember have all helped out moving the field forward and uncovered embarrassing truth for the PACEtrial authors and their universities. There are ways to get our point across without violence or threats.
yeah, it was a joke. Not up to some laughs?
 

Kati

Patient in training
Messages
5,497
You're absolutely right, I have no control on how people behave themselves. However I am a forum member and I have the exact same right to participte in this forum as anybody else.

My only goal here is to prevent PWME to be further branded as mentally unstable and for some of the other side to believe that their personal safety is jeopardized.

I will leave it as that.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
My only goal here is to prevent PWME to be further branded as mentally unstable and for some of the other side to believe that their personal safety is jeopardized.

I haven't chimed in after my initial explanation.

Just wanted to say while I appreciate the sentiment (as quoted above) I confess to being a little confused as to how it ever fell into this category.
I have absolutely no ability to influence Peter Tatchell to do anything of the sort. No-one's lives were ever in danger.

Indeed I based my comment on the video of Tatchell 'citizen arresting' Mugabe. I happen to think that the BPS group have a rather similar moral compass and (as is often the case with me) it provided a humourous visual image that I shared as a brief statement.

Robert Mugabe was none the worse for his brush with PT (although I suspect that he whined rather less than I would imagine the BPS would)

And I believe it's the case that we've already been branded as mentally unstable. And that we will continue to be so even as we do things that in other situations would be viewed as perfectly sane (like request information).

In my opinion, if the BPS want to publicly excoriate pwme based on that comment they are welcome to. I think most people would know enough to find it amusing that the BPS feel threatened by a flippant remark. Only the sycophant hangers on would be deeply enraged on their behalf.

I do appreciate there is a line where BPS can score points off an intemperate comment but for me the line is not here. There is space to discuss where that might be but I expect there is a range of opinion that forms a gray area between absolutely harmless and needful and unnecessary and harmful.

It also begs another question. What constitutes mentally unstable?


While there are those clear cases of mental debility due to physical illness (schizophrenia and so on). Many others lumped in this category branded as mentally unstable are simply politically inconvenient and the real craziness comes from the keepers not the inmates.
 
Messages
2,125
Found this on Twitter:
Luna CM Centifanti‏@LunaCentifanti 5h5 hours ago


Chalder - psychoeducation used as an intervention in comparison to family CBT - CBT grp better faster but both same at f-up #ICCAP2017

DE8G_nsW0AU5SFt.jpg


ets:
Luna CM Centifanti‏@LunaCentifanti 5h5 hours ago


Chronic fatigue in adolescents are hi conscientious, had hi expectations for themselves, parents overestimate child IQ #ICCAP2017 - Chalder

0 replies 2 retweets 2 likes
 

MEMum

Senior Member
Messages
440
I've pressed "like" as a way of thanking you for accessing and sharing these tweets slysaint.
I can't stand what they are conveying.
Would they say that parents and children with cancer whose symptoms are distressing and debilitating pay too much attention?
They are gradually realigning their views, talking about pacing, not GET/GAT.....

I was very interested to see that a recent presentation on MUS did not reference PACE at all.