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

Snowdrop

Rebel without a biscuit
Messages
2,933
Likes
10,172
Davey Smith's cogent argument--and the response to it--really does make clear the origin of the bad feelings between the BPS group and ME activists. The BPS have known for some time that they may have got it very wrong in this case especially so because with this disease process that is ME GET can cause actual harm while CBT ignores the severity of the disease in favour of treating fatigue.

You can sense that they feel cornered and very angry about being perceived as silly fools in hindsight (I see the statement as an admission of error). At least parts of the BPS school have been repositioning themselves for some time. But the damage is done. Getting out from under it is proving difficult especially given that their ideas are 'out there' on the internet--a possibly unforeseen complication.

These are people who are distinguished professionally, given awards etc so it would be reasonable for it all to be quite galling that they should be badly treated by those they tried to help. Unfortunately they paradigm they work from is insupportable but it is the very foundation of what they do and how they do it. For us who have been harmed (even if by proxy--stalling research that would have benefitted all of us) it is more difficult to accept the reasonableness of the BPS concern for their reputation.

The efficacy of CBT for ME has been downgraded to modest --a fortunate word choice as it sounds relatively close in meaning to the previous moderate efficacy. This may also explain the remarkable recoveries that we've been hearing about in the British press. No need to refer to CBT . . .back to vigourous exercise. So if we ME patients are going to be so unkind and ungrateful perhaps making it more difficult will show us who we're dealing with.
 

Aurator

Senior Member
Messages
625
Likes
3,072
Charles, I find one thing a little unclear.
The first paragraph says "we have assisted a number of students with ME/CFS in relation to both their entry to medical school and their studies whilst at medical school". Further down the page it says "we will require...a short summary...about why they have developed an interest in ME/CFS".

Are the prospective applicants expected to have ME/CFS themselves or not?
 
Messages
2,239
Likes
16,221
I'm sorry this is not clear and I will have a look at the wording again

The award is open to any medical student here in the UK - there is no requirement that they have to have ME/CFS

We have already had two good applications:

One with ME/CFS; one without ME/CFS

We will make a decision in late August
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,334
Location
Scotland
Are any of the sessions normally filmed & made available on the net?
This is only the second conference. Nothing was filmed last year and I don't think there are plans to do it this time. We managed to cobble together some reports for the last one. I was at the joint patient researcher session, @Simon had a source at the conference and @Jonathan Edwards was at a lot of the researchers only sessions.

I'm intending to go to Newcastle but, once again, it will be for the joint session only.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,217
Location
UK

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,334
Location
Scotland
They're going to livestream part of it (I think only the bit that patients can attend):
That's both good news and such a shame.

Watching the joint workshop would be like staring at paint drying. Worthwhile for the Panel presentation and Q&A, though, assuming they do it again. That lasted about 45 mins or so IIRC.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,217
Location
UK
That's both good news and such a shame.

Watching the joint workshop would be like staring at paint drying. Worthwhile for the Panel presentation and Q&A, though, assuming they do it again. That lasted about 45 mins or so IIRC.
I think it's a good start. Perhaps they'll get confident enough eventually to offer more.
 

Seanko

Senior Member
Messages
119
Likes
96
Location
Swindon, UK
@Sasha & @Scarecrow

Maybe we could speak to AfME (who seem to be organising the logistics) to make streams and relevant information available to patients and other stakeholders).

As you noted, not all sessions will be interesting. :)
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,334
Location
Scotland
@Sasha & @Scarecrow

Maybe we could speak to AfME (who seem to be organising the logistics) to make streams and relevant information available to patients and other stakeholders).

As you noted, not all sessions will be interesting. :)
It's early days for the CMRC, so I expect that they're learning as they go along. The format may not be identical to last year - we'll have to wait and see.

It would be great to see some of the researcher only sessions streamed but the problem is that some of the information is not for public dissemination. eg embargoed pending publication, so I can't see streaming being likely. It shouldn't prevent them doing what IiME do - they release a DVD some months later, edited if necessary.

Sonya Chowdhury at AfME is very approachable. Providing feedback can only be a good thing.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
762
Likes
2,537
RE: ''talking to AFME'' regarding proper research.

Doing this and expecting any real help with genuine neurological ME advocacy, is a fools errand. You will be talking to a mindset that supported the PACE trial!

The UK ME CFS Research Collaborative, also contains fatigue 'researchers' with the same mindset (BPS lobby), who historically, deny ME exists as an organic disease and still remain of this belief today (Non science based). Thousands of papers are published in CFS, showing organic dysfunction.

Engaging with such belief systems if you want ME research optimised, is not going to work. You cannot influence people who will not listen and alter their practices by following biomedical CFS research, due to carrying on with their own 'beliefs', regardless of the changed scientific picture that was not allowed to be part of the NICE Guidelines or indeed the previous reviews either in the 1990's. Consider why, historically, biomedical research is not allowed to become part of British guidelines or CDC (for example), who insists on this weird holding pen for ME as CFS, and this mixture of CFS = ME = somatization perhaps policy, is passed in meetings as being optimal and ethical.

Nothing has changed and ever will, until a pathogen, and a transmittable one (at least within families) is proven. Advocates cries for common sense from AFME or indeed anyone associated or a supplicant to the state, will fall on deaf ears, even if appeals for common sense debate are admirable.

Independent researchers (not 'fatigue' researching doctors and psychologists), will be the scientists who, ultimately, publish the pathogen studies we need, and these papers will make people worried, that they too may 'catch' ME, theoretical due to close contact prion spread, genetics, and autoimmunity via pathogenic HERVs.

IF that happened, fatigue as an explanation for 'ME' would be laughed at, and in would come the big boys and girls to get the job done - microbiologists, retrovirologists, and never ever, psychiatrists and other 'professionals' in denial of the disease process as a bizarre collaboration or compromise, deemed necessary for political correct reasons. (Saving face in the march of changing science).

As HIV taught us, and Lyme like disease will teach us, pathogens overcome political correctness once we've all got the bug. Talking about 'fatigue' belongs back with Charcot, as this book, by a patient, explains:

http://www.amazon.com/Charcots-Bad-Idea-Simon-Overton/dp/1409265420/ref=sr_1_1?ie=UTF8&qid=1438903547&sr=8-1&keywords=Charcots bad idea
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,334
Location
Scotland
The UK ME CFS Research Collaborative, also contains fatigue 'researchers' with the same mindset (BPS lobby), who historically, deny ME exists as an organic disease and still remain of this belief today (Non science based). Thousands of papers are published in CFS, showing organic dysfunction.
I agree and it's a real heart-sink. I was desperately disappointed to see that someone who wrote this as recently as 2012 has just joined the board.
For many, including this reviewer, CFS/ME is predominantly a condition triggered by excessive rest in predisposed individuals following acute triggers, and its interpretation requite a psychosocial and psychiatric framework.
However, people's minds can be changed. Not everyone who disagrees with you "will not listen".

But it could be said that you, yourself, betray a certain inflexibility of thought:
Nothing has changed and ever will, until a pathogen, and a transmittable one (at least within families) is proven.
Many forum members would disagree with you. Lots of things run in families that have nothing to do with pathogens. And many people don't recall any association between their illness and a pathogen, while others were already aware they were on a decline before an infection tipped them over the edge.
 
Last edited:

Seanko

Senior Member
Messages
119
Likes
96
Location
Swindon, UK
Well done to the organisers for pulling together an impressive group of researchers from top instituations.

Getting Jose Montoya to come all the way from San Francisco is an an achievement. Plus Oysten Fluge & Julia Newton.

Not something to be petty or churlish about!
 
Messages
1,446
Likes
3,623
Oh yes, the abused patient population pre-emptively put on the naughty step. The weird pre emptive patient blaming and gagging of charities which may be justifiably critical of some CMRC members (see previous posts on this page).
 
Last edited:

Seanko

Senior Member
Messages
119
Likes
96
Location
Swindon, UK
I can't see many people wanting to abuse Drs Fluge or Montoya. :p

If I met them I'd prefer to say, "Well done old chap, carry on with your excellent work."
 
Messages
1,446
Likes
3,623
It should be remembered that both Invest in ME and the Tymes Trust declined to be part of the Collaborative, with sound reasons. BPS supporters really should have no place anymore in any serious ME research enterprise. It is exciting how international research is developing. But in the UK BPS research keeps right on guzzling precious research funds.
 

Seanko

Senior Member
Messages
119
Likes
96
Location
Swindon, UK
It should be remembered Drs Fluge & Montoya are world class researchers...should we dismiss their contributions.

Obtaining the support of the Medical Research Council (MRC) is the key to obtaining proper funding for ME/CFS research in the UK.

@Wildcat How would you persuade the MRC to fund proper large scale research?
 
Last edited by a moderator: