Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

[NK17]

If Dr. Lipkin isn't our Trojan Horse, maybe Dr. Edwards can be?

So much seems to be happening around ME these days, I remain on high alert for possible psychobabblers' old school contagiousness, while being hopeful in a better future.

Let's watch and listen first and then eventually protest.

 

[Snowdrop]

I want to say, I appreciate Prof Edwards engagement with the ME community and his desire to help immensely.
That said it is still my opinion that collaborating with anyone from the BPS will likely not give any real results for us.
It's an opinion and I could be wrong, if I am I will be one happy camper to discover it to be so.

I'm not out to tell others what they feel is the right thing to do however. We all have to deal in whatever way we find appropriate.
I use a fictional 'we' because I can't actually DO much of anything. I have been ill for a very long time.

While I do understand that interested people may come here with the idea of wanting to help please also understand that there is NOWHERE I can go in the real world to grouse, complain and generally let off steam. For me PR is that place. If newcomers want to come here and learn/share more real information about ME they can find the ignore button and use it.
If I can't let off steam I will be forced down a very dark path.

I'm not depressed, I'm exhausted from dealing everyday with ME. Many days I cope but the subject of abusers like SW continuing to waste time and money. . . I just can't keep it .

PS I do apologise for going off topic. I won't come here again to post on the subject.

 

[rosie26]

We have some business to do: some research and treatment to get going. Some more minds to win over.

Yes! Thank you Prof Edwards. So pleased.

 

[alex3619]

Instead of complaining what we need to do is collaborate to write very detailed and focused articles or papers, then publish. Publishing in mainstream is best of course, which means the paper has to target a very specific audience.

 

[alex3619]

I think it is a big mistake to collaborate with or even tolerate psychobabblers. Even merely tolerating them gives them some degree of legitimacy. Their goals are opposed to ours, so I'm not sure what good their presence could do. What we want is biomedical research and treatments grounded in reality. They don't want that because it would invalidate their models and negatively impact their careers and funding. Simply refusing to have anything to do with them is the best course of action.

I think tolerance of psychobabble is one of the leading problems in medicine today. ALL doctors who do not oppose it are giving consent by silence. Ditto for scientists. I am aware of many scientists who oppose it privately, but little is seen about that publicly. I think its similar with doctors, but I have less personal knowledge in that area.
This is not the thread for this though. I suggest a new thread.

 

[Min]

STATEMENT ON THE UK CFS/ME RESEARCH COLLABORATIVE (in existence since April 2013)



The Grace Charity for M.E. is not in agreement with the setting up of the recently appointed organisation, the UK CFS/ME Research Collaborative (CMRC).


Those representing the truth of M.E. (i.e. the biomedical perspective) cannot ‘work alongside’ those representing the mistruths of M.E. (i.e. the bio-psychosocial perspective). There is no compromised position to be found between these two opposed views because compromise means to have something in common.


How can the truth of M.E. as an organic illness with real pathology, find any common ground with those who believe it is an illness caused/perpetuated by wrong psychological beliefs and cured by CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy)?


A similar approach with attempting to find ‘common ground’ was tried in 1998-2002 with the Chief Medical Officer’s Report. Proponents of both the biomedical and bio-psychosocial perspectives were on the Key and Reference Groups.


What resulted from the CMO’s Report was the setting up of CFS/ME ‘clinics’ from a bio-psychosocial perspective, offering CBT and GET; some were (and still are) clearly in the Mental Health section of hospitals. These ‘clinics‘ were a tragedy for the truth of M.E. and dashed the hopes of many M.E. sufferers and their families.


In addition, the recent UK CFS/ME Research Collaborative may give an appearance of condoning the bio-psychosocial group and giving them unmerited credence.


Perhaps it would be better if the M.E. research groups and charities joined together instead, as one strong biomedical voice to oppose the bio-psychosocial groups, rather than ‘work alongside’ them?

Then, by being a force refusing to ‘dumb down’ M.E., they might be in a stronger position to support the brave doctors who have paid unjust penalties from the GMC for their treatment of M.E. sufferers from the correct perspective – a biomedical one.


The Grace charity for ME

http://www.thegracecharityforme.org/documents.asp

 

[Griffin]

I haven't read all this thread, not enough energy at present. So apologies if this has been said.

I think Holgate either had an agenda, or was incredibly naive in approachiing White and Wessely.

I think the argument about CFS/ME was pretty stupid and the claim that pubmed uses CFS/ME complete nonsense. I've just completed a research project involving lots of pubmed searches etc. and I have never seen CFS/ME used in any of the many paper retreived - they always use ME/CFS.

I cannot see what harassment has to do with this collaborative in any shape or form.

The collaborate seems compromised to me.

 

[alex3619]

New thread: http://forums.phoenixrising.me/inde...le-the-biggest-issue-in-medicine-today.32354/

Since the link is truncated in the threads, it reads: Is tolerance to psychobabble the biggest issue in medicine today?

 

[Dolphin]

Instead of complaining what we need to do is collaborate to write very detailed and focused articles or papers, then publish. Publishing in mainstream is best of course, which means the paper has to target a very specific audience.

I would encourage people to write letters and e-letters first before taking on bigger tasks. To get published in peer-reviewed journals, one needs to write sentences which are nearly always backed up by evidence/references. It takes time to build up knowledge about what one can and can't says based on the references one has.

 

[alex3619]

I would encourage people to write letters and e-letters first before taking on bigger tasks. To get published in peer-reviewed journals, one needs to write sentences which are nearly always backed up by evidence/references. It takes time to build up knowledge about what one can and can't says based on the references one has.

Agreed. We need more experience, not just as individuals, but teams. This is a long process, not a quick fix. Its not just about evidence though, its about proper treatment of that evidence, though some of the nonsense I see get through the peer review process does make me wonder.

 

[Dolphin]

Agreed. We need more experience, not just as individuals, but teams. This is a long process, not a quick fix. Its not just about evidence though, its about proper treatment of that evidence, though some of the nonsense I see get through the peer review process does make me wonder.

Yes, but to be able to say it's nonsense, it generally helps to be able to reference other things that backs up the point esp. if one doesn't hold an academic position.

 

[alex3619]

Yes, but to be able to say it's nonsense, it generally helps to be able to reference other things that backs up the point esp. if one doesn't hold an academic position.

Or otherwise demonstrate it clearly. Simply disagreeing with something is not enough.

 

[Dolphin]

Yes, but to be able to say it's nonsense, it generally helps to be able to reference other things that backs up the point esp. if one doesn't hold an academic position.

Or otherwise demonstrate it clearly. Simply disagreeing with something is not enough.

I think one might be disappointed in terms of getting published if one writes something without enough references.

 

[alex3619]

Been there, done that. The issue is that the publication needs to be targeted and focused. You can't reason about things without facts, and this includes citing things. Yet we have a tendency to overlook the simple issue of clearly showing something is wrong, based on the clear evidence. Citing stuff without adequate reason or analysis, or flawed reason and analysis, can't be fixed by just citing more papers. Clarity, focus, evidence.

Our biggest issues are likely to be something else ... if we attempt to take on too big an issue then we will not be able to properly address it, and so will lack the kind of rigor necessary. If we overstate the case beyond what we can demonstrate, we will also have issues. However even after all this the topics we might want to cover may not be well received, no matter how rigorous the argument, and so finding suitable publication targets is going to be tricky.

I would at least hope that what we cite is from reputable sources.

 

[Valentijn]

@alex3619 - Many journals literally will not publish any statement in a letter which is not supported with a citation, with the possible exception of the opening sentence. Logic and reason are insufficient to them - there must be an authority.

 

[Dx Revision Watch]

Could I suggest that the thread stays on topic, please, which is the assembly and operation of the UK CFS/ME Research Collaborative?

Perhaps a separate thread might be started (if one does not already exist) for discussing the difficulties around co-authoring and submission of journal papers.

 

[Quilp]

I think you are right. Perhaps more importantly jumping up and down might put off people who are interested in biomedical research. I don't need to set my alarm clock for 6.00am to get a train to Bristol of Monday. But I will because I want to talk to Dr Lipkin, Dr Holgate, Dr Dantzer, Dr Lloyd, Dr Watson - which are the names that I can see on the programme. And stridently pessimistic and non-sequitur comments on PR are fortunately in a minority so I am encouraged to continue. But if PR is to be a place where top ME researchers log in to see what's news and get new ideas, as seems to me something to hope for, then we have to remember that, as Bob says 'not everyone is as independently minded as you are, Jonathan'. Some might get put off by the endless repetition of grouses that may be fair enough but get nobody any further on. We have some business to do: some research and treatment to get going. Some more minds to win over.

Wasn't it Lipkin that said he couldn't understand why the ''M.E. community'' haven't been more vocal ? I think given everything we have been through ( 19 years in my case ) I believe we have exercised a remarkable degree of constraint.
This board is all the more vibrant, all the more engaging, because some of us choose to ''jump up and down''.

Do any of the would-be researchers ( hitherto absent during the last thirty years when many of us didn't do much of anything, let alone jump up and down ) ever think to step back and wonder why so many of us are so angry ? If that puts them off, then one might ask how committed they might have been in any future research.

Perhaps we would have been less strident, less damning, less angry, if those that were in a position to see what a hideously grotesque narrative had been scribbled all over our very existence, had done some jumping up and down of their own, instead of keeping so quiet, for so long ( in particular the MRC )

Apologies for being so strident

 

[Dx Revision Watch]

Prof Paul Little (University of Southampton) participates in the Collaborative. A recent award for Prof Little:

Edited to add bio: http://www.southampton.ac.uk/medicine/research/staff/psl3.page

http://www.southampton.ac.uk/assets/imported/transforms/peripheral-block/UsefulDownloads_Download/27A1A2D635354AD595D0F353ADF3466C/CAHP News June 14.pdf

RECENT ACHIEVEMENTS
Grant funding awarded

H Everitt (PI); R Moss-Morris, T Chalder, P McCrone, P Little, S Landau, F Bishop, R Logan, N Coleman “Assessing
Cognitive Therapy in Irritable Bowel (ACTIB)” NIHR HTA. £1,232,554


Prof Little wasn't a co-researcher in this recently published scoping exercise (also out of U of Southampton):

http://bmjopen.bmj.com/content/4/6/e005083.full?sid=643d58c3-f6ee-470e-a7d2-8ed30dee6ffa

What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise

Clare McDermott1, Atheer Al Haddabi2, Hiroko Akagi3, Michelle Selby4, Diane Cox5, George Lewith1


but he is a co-researcher in this new Southampton study based on Neuro-Linguistic Programming concepts:

Page 4

http://www.anlp.org/files/2014-abstract-summary_11_378.pdf

Feasibility study for a community based intervention for individuals
with severe CFS/ME

Clare McDermott(*), Sarah Frossell, Dr Selwyn Richards, Prof George
Lewith, Prof Paul Little, Prof Diane Cox, Dr Geraldine Leydon, Dr Caroline Eyles.

* Corresponding author: Clare McDermott, Primary Medical Care,
Aldermoor Health Centre, Aldermoor Close, University of Southampton,
SO16 5ST.

Background

Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating
fatigue, pain and other symptoms. Severe CFS/ME can lead to patients
becoming housebound or bedbound.1 There is little published research
on this patient group.

Method

Design Feasibility and acceptability study of a community based
intervention for adults with severe CFS/ME, with qualitative and
quantitative evaluation. Design based on the Medical Research Council
Guidelines for evaluating complex interventions.2 Setting: Domiciliary
care delivered by multi-disciplinary teams based at specialist NHS
CFS/ME services.

Participants

20 patients diagnosed with CFS/ME [Centers for Disease Control (1994)
criteria]3, who are severely affected [Cox & Findley (1998) criteria].4

Intervention

Recovery strategies based on the Neuro-Linguistic Programming concept
of 'modelling success', adapted for use in severe CFS/ME through
in-depth Patient and Public Involvement development work conducted
over two years. The intervention includes a range of NLP techniques,
delivered through audio recordings, direct therapist contact and
social contact via peer recovery support group. One year active
intervention + one year support and follow-up.

Primary measure

Clinical Global Impression of Change

Secondary outcome measures include

- Electronic activity and sleep measurement
- Patient reported outcome measures on fatigue, pain, physical
function, anxiety, depression, self efficacy and quality of life.
- Therapist completed outcome measures on physical function.

Results

This study is currently recruiting patients in Dorset and Oxford.
Results will be available in 2016.

The study is funded by the National Institute of Health Research (NIHR) and has
been peer reviewed by the National School of Primary Care Research.

(1) National Institute for Heath and Clinical Excellence (NICE).
Chronic fatigue syndrome/Myalgic encephalomyelitis (or
encephalopathy): diagnosis and management of CFS/ME in adults and
children. NICE clinical guideline 53. 2007. London, National
Collaborating Centre for Primary Care.

(2) Medical Research Council. Developing and evaluating complex
interventions: new guidance. 2008.

(3) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A.
The chronic fatigue syndrome: a comprehensive approach to its
definition and study. International Chronic Fatigue Syndrome Study
Group. Ann Intern Med 1994; 121(12):953-959.

(4) Cox D, Findley LJ. The management of chronic fatigue syndrome in
an inpatient setting: presentation of an approach and perceived
outcome. British Journal of Occupational Therapy 1998; 61 (9):405-409.
(3) MRC guidelines.

--------
(c) 2014 Association for Neuro Linguistic Programming

A little more here:

http://www.spcr.nihr.ac.uk/news/newsletter-issue-2-5.pdf

Page 7

Developing a new intervention for patients with severe
Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis

Clare McDermott, Sarah Frossell, University of Southampton

Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) can
result in patients becoming housebound, wheelchair or bedbound. There is
currently little evidence based treatment available for this severely disabled
patient group.

We set out to answer the question ‘How can the experiences of patients who
have recovered or substantially improved from CFS/ME be used as a resource
to help current CFS/ME patients?’

A series of development groups met in half day workshops with the goal of
understanding and modelling the key elements and skills required for recovery
from CFS/ME, drawing on the lived experience of patients.

Group sessions were facilitated using the conceptual model of ‘modelling
success’ from neuro-linguistic programming. Within the groups, all members
acted as equal peers, contributing individual insights and experience to
the process. Group members identified key recovery skills, and how best to
communicate these in ways which are meaningful to those with CFS/ME.
Barriers to effective communication were identified and creative ways of
addressing these issues were discussed.

Insights generated by this development group have been used to devise and
refine a community based intervention for patients with severe CFS/ME. This
intervention is the subject of an NIHR funded feasibility study which is currently
recruiting patients in Dorset and Oxford.

 

[Dx Revision Watch]

Job vacancy

https://www.jobs.soton.ac.uk/Vacancy.aspx?ref=402514F5

Trial Coordinator

FOS - Medicine

Location: Aldermoor Health Centre
Salary: £28,132 to £34,565 - pro rata, per annum
Part Time, Fixed Term - 7 hours per week (1 year)
Closing Date: Tuesday 20 May 2014
Interview Date: Friday 27 June 2014
Reference: 402514F5

Faculty of Medicine - Faculty Operating Service (FOS)

A position is available in the The University of Southampton, Faculty of Medicine, for a Trial Coordinator. The position is based at Aldermoor Health Centre in the Primary Care and Population Sciences Unit.

You will be educated to degree level or have equivalent experience, possess excellent organisational and communication skills, with previous trials experience a distinct advantage. Excellent word processing, communication skills and a good eye for detail are essential requirements for this post.

You will be responsible for coordinating the FAME study, which is a feasibility study aimed at informing a larger programme of research concerned with helping patients to manage short-term fatigue and to better understand and predict which patients with acute fatigue will go on to develop Chronic Fatigue syndrome /Myalgic Encephalomyelitis (CFS/ME). It is funded by the NIHR School for Primary Care Research.

This post is offered part time (20%), 7 hours per week, for 12 months (from 1 August 2014).

etc.

Spec https://www.jobs.soton.ac.uk/Upload/vacancies/files/7403/Trial Coordinator FAME.doc

-----------------

FAME Pilot

http://www.spcr.nihr.ac.uk/research/fame-pilot

Fatigue: acute fatigue assessment and management in everyday

Paul Little, University of Southampton

This research aims in the proposed future NIHR Programme grant to help patients manage short-term (acute) fatigue – one of the most intrusive but often hidden symptoms – and to better understand and predict which patients with acute fatigue go on to develop Chronic Fatigue (lasting 6 months or more) or Chronic Fatigue Syndrome/ myalgic encephalomyelitis (CFS/ME). We will also explore whether a web based intervention can help both acute fatigue and also prevent progression to chronic fatigue etc.

 

[ithought]

I really do feel that this is a edited document that just serves to encourage paranoia and not be helpful to research or the needs of the ME community at all.

Yes so what a professional in a field asks another professional for suggestions.. So what he wouldn't be who I would turn to for advice but like it or not some people do see him as a leading researcher and someone who is able to direct people.

Paranoid thinking will not help anyone.