Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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CMRC 2017 conference update: Look who’s flying-in next month!

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 18, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    CMRC 2017 Update: Look who’s flying-in to present at the ME/CFS research conference next month! | 18 August 2017

    “I am very excited to attend the CMRC conference and welcome the chance to talk about our research with other researchers from around the world. M.E./CFS can turn a life of productive activity into one of dependency and desolation, and it is only through collaboration that we can challenge the horrors of this very real disease and improve lives for the thousands of patients living with it on a daily basis.” Professor Jose Montoya.

    More details here:

    http://www.meassociation.org.uk/201...-at-the-conference-next-month-18-august-2017/
     
  2. dangermouse

    dangermouse Senior Member

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    That's a thumbs up :thumbsup:
     
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  3. AndyPR

    AndyPR Cookies for Tired Sam

    I'd imagine Montoya and Nath must be soooo excited to be at the same event as Crawley, how will they ever be able to top that? Imagine all they will be able to learn from her.....
     
  4. Esther12

    Esther12 Senior Member

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    Crawley and Holgate need a six hour lecture from Tuller. At the moment, people like Montaya are just a distraction from the quackery that defines the CMRC.
     
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  5. NelliePledge

    NelliePledge plodder

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    Really positive.
     
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  6. Demepivo

    Demepivo Dolores Abernathy

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    @charles shepherd A very interesting looking programme

    On Day 2 there is an update from MRC funded researchers: Prof Carmine Pariante; Prof Esther Crawley; Prof Anne McArdle; Dr Mark Edwards; Sue Wilson

    I contacted MRC about results the MRC Tissue Programme & MEGA..results are embargoed until October (Grants begin in September)

    https://www.mrc.ac.uk/funding/brows...-data-in-partnership-with-charities/#Timeline

    I guess already you will know whether the MEGA team have been awarded a grant.....
     
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  7. charles shepherd

    charles shepherd Senior Member

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    I am not part of the MEGA team - it's really up to them when and how they announce the result of this research funding application

    I assume that some information will appear at the CMRC conference

    CS
     
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  8. BurnA

    BurnA Senior Member

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    Montoya was at this before as far as I remember, didn't seem to make a difference then and I would not be optimistic at all this time.

    The whole CMRC is a farce, if they remove Day 2 then maybe it would be a positive but until then I fail to get excited about this conference.
     
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  9. charles shepherd

    charles shepherd Senior Member

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    Maybe you weren't concentrating hard enough?

    Or not even at the conference?

    I though he gave an outstanding presentation to the Newcastle conference about both his immune function research and the clinical trials involving valganciclovir

    Jose also came to the Workshop on Neuropathogy and made a very useful contribution, including collaboration with our UK post-mortem research group

    CS

    Main conference report:
    http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/


    Summary of his presentation

    Professor Jose Montoya, Stanford University, USA, opened the first plenary session on neuropathology with an outstanding presentation that commenced with a one-minute silent tribute to his close colleague and friend Dr Martin Lerner, who had recently died. Martin Lerner had worked with Professor Montoya on a number of research studies, including the use of antiviral treatment.

    Professor Montoya also referred positively to the impact of the Institute of Medicine (IoM) report and is a supporter of the new IoM diagnostic definition for ME/CFS (or systemic exertion intolerance disease/SEID as is being recommended in the report) because he believes that clinicians need a simple and accurate way of making a diagnosis.

    He believes that the new IoM definition, which emphasises post-exertional malaise and orthostatic intolerance, is preferable to the options – eg Canadian, Fukuda – that are currently available. Work from the Stanford group indicates that there is a strong (90%) concordance between Canadian, Fukuda and IoM definitions.

    He then said that people with ME/CFS had been ignored and humiliated by the very people who were supposed to be helping them – the medical profession. In his own words….“I have a wish and a dream that medical and scientific research societies in the US apologise to their ME/CFS patients”.

    Turning to treatment, Professor Montoya described how the publication of a flawed clinical trial involving acyclovir back in 1988 had led to the view that ME/CFS was not caused by EBV infection and that antiviral drugs do not have any role in the treatment of ME/CFS.

    Despite this, he has been involved in a number of the clinical trials that have assessed the efficacy and safety of the antiviral drug valganciclovir.

    This is a treatment option – involving a lower dose than is normally used in other situations and over a prolonged period of time, at least 6 months, possibly much longer – that he now uses for some ME/CFS patients with considerable success.

    In addition to antiviral activity and reduction of latent HHV-6 replication, he believes that this drug may have immunomodulatory effects in ME/CFS as well (as it can decrease the level of white blood cells called monocytes and reduce microglia activation in mice).

    [CS note: During the discussion that followed I pointed out that here in the UK antiviral treatment is not recommended by NICE – so antiviral drugs are seldom used in ME/CFS and very little interest has been shown in further research or clinical trials involving antiviral treatment. The ME Assoxciation has met with Roche, the pharmaceutical company that makes this drug, but we did not have any success in trying to set up a UK clinical trial. We clearly need an independent randomiaed placebo-controlled trial to assess the value of valganciclovir in ME/CFS.]

    Professor Montoya then described some of the other research that his multidisciplinary group at Stanford are carrying out on a large group of ME/CFS patients, along with healthy controls, with the help of a $5 million anonymous donation. In particular:

    • Immune function studies that are looking at the response to infection with various organisms. In particular, the role of immune system chemicals called cytokines, how the cytokine pattern changes over time (less or more than 3 years – the Hornig/Lipkin study), as well as daily fluctuations in cytokines relating to activity levels. To do so they can measure over 50 individual cytokines and have access to a cohort of around 200 ME/CFS patients and 400 controls. Proposed research at Stanford will also involve a detailed study of the role of NK cell status and function in ME/CFS.

    • Virology studies examining the role of latent herpes viruses including EBV and HHV-6 and how low NK function may be maintaining HHV-6 activation in ME/CFS. Professor Montoya also referred to research involving Torque viruses. CS note: Torque teno virus is considered to be a relatively new global marker of immune function and the more immunosuppression occurs, the higher the level of torque viruses. Professor Montoya pointed out that torque viruses have been found to be lower in ME/CFS – adding further support to the role of immune system activation in ME/CFS.

    • Neuroimaging studies looking at both grey and white matter in the brain – one of which has used diffusion tensor imaging, an MRI based technique that can visualize location, orientation and anisotropy of white matter tracts in the brain. This study has recently been published and described a very significant structural abnormality involving the right arcuate fasciculus. This structure contains fibres which connect different areas of the brain. The fibres are thicker in ME/CFS than in healthy controls and the inference is that nerve fibre transmission is therefore affected. The abnormality could turn out to be a diagnostic marker for ME/CFS.

    • Genetic studies examining HLA characteristics in ME/CFS and a genetic predisposition to ME/CFS

    Key references:

    Immunology: cytokine status and illness duration www.ncbi.nlm.nih.gov/pubmed/26079000

    Neuroimaging: right arcuate fasciculus abnormalityhttp://pubs.rsna.org/doi/abs/10.1148/radiol.14141079

    Valganciclovir clinical trials:

    Kogelnick 2006:
    www.ncbi.nlm.nih.gov/pubmed/17276366

    Lerner et al, 2002:
    www.ncbi.nlm.nih.gov/pubmed/12582420

    Lerner et al: 2004:
    www.ncbi.nlm.nih.gov/pubmed/12582420

    Montoya et al 2013:
    www.ncbi.nlm.nih.gov/pubmed/23959519

    In this trial Montoya et al randomized (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir (VGCV) or placebo for 6 months in a double-blind, placebo-controlled trial.

    Statistically significant differences between groups were observed in mental fatigue sub-scores and cognitive function.

    The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining 9 months.

    In the VGCV arm monocyte counts decreased, neutrophil counts increased, and cytokines were more likely to evolve towards a Th-1 profile.]

    Watt et al, 2012
    www.ncbi.nlm.nih.gov/pubmed/23080504

    Valganciclovir reduces inflammation in HIV:http://hivandhepatitis.com/recent/2011/0426_2011_c.html

    All patients treated with valganciclovir had undetectable CMV viral load after 8 weeks of treatment, while 44% of those in the placebo group still had detectable CMV.

    In addition, valganciclovir-treated participants had significantly greater reductions in CD8 T-cell activation (defined as CD38+HLA-DR+ marker profile) compared with placebo recipients at weeks 8 and 12 — a reduction of about 20%.

    Patients in the valganciclovir arm also had reduced levels of high-sensitivity C-reactive protein (CRP), a blood biomarker of inflammation.]

    Virology: Torque viruses:http://jid.oxfordjournals.org/content/early/2014/05/05/infdis.jiu210.full<

    YouTube video of opening remarks from Professor Stephen Holgate and presentation from Professor Jose Montoya:

    www.youtube.com/watch?v=69Jz43kSQX0

    Ends
     
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  10. charles shepherd

    charles shepherd Senior Member

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    There are still some places at the conference available for medical students, clinicians and researchers, and for people with ME/CFS who would like to hear the views of Professor Jose Montoya and Professor Peter Rowe, and many others

    The MEA student bursary scheme is still open as well.

    We have made 5 awards - so there is only one place left to fill!

    CS
     
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  11. BurnA

    BurnA Senior Member

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    Sorry Charles, I wasn't at the conference, and my point was not about Montoya per se.

    I just have a lack of excitement around the CMRC conference in general.

    I am sure Montoya gave a very informative talk, but 2 years on the CMRC still think it is useful to devote a full day to the quacks.
     
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  12. MEMum

    MEMum Senior Member

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  13. Esther12

    Esther12 Senior Member

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    Good God I pray Crawly hasn't got more funding. Surely they should at least wait until SMILE makes it crystal clear to everyone what sort of researcher she is.
     
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  14. A.B.

    A.B. Senior Member

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    The SEID definition and IOM report were a bold political move. We need to win at the political level, or we can't get enough research funding and adequate medical treatment.

    Montoya and Nath are making this conference interesting.
     
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  15. NelliePledge

    NelliePledge plodder

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    hi @BurnA trying to educate myself here Ive had a look at the programme for days one and two and other than E Crawley the other presenters look to be involved in biomedical research rather than behavioural stuff or am I missing something?
     
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  16. charles shepherd

    charles shepherd Senior Member

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    No - you are not mistaken!

    And if you look at the reports from the previous CMRC conferences you will see that the content is almost 100% biomedical research into cause and treatment of ME/CFS

    Whatever your feelings about the CMRC (and I am painfully aware that most people on PR who contribute to these discussions do not like or even hate the CMRC), I'm sure there are plenty of doctors and patients who will want to come and listen to presentations from:

    Dr Avrinda Nath - National Institutes of Health, USA (post infection ME/CFS study at NIH)

    Professor Maria Fitzgerald - University College, London (Pain)

    Professor Anne McArdle - University of Liverpool (mitochondrial dysfunction)

    Professor James McCullagh - University of Oxford (metabolomics)

    Professor Jose Montoya - Stanford ME/CFS Initiative, USA (immune system dysfunction)

    Professor Peter Rowe - John Hopkins Children’s Centre for CFS, USA (orthostatic intolerance and PoTS)

    Professor Don Staines - Griffith University, Australia (Transient receptor potential ion channels and impaired calcium signalling in natural killer (NK) cells in CFS/ME patients)

    And others…..

    Current conference programme:

    https://www.actionforme.org.uk/uploads/pdfs/cmrc-2017-programme-updated-180817.pdf

    And other high profile names may still be added

    I think it will be a very interesting and informative meeting this year

    Incidentally, we now have more UK medical students applying for the 6 MEA assisted places at this year's conference than we can fund. Surely that must be a good thing as well?

    CS
     
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  17. Jan

    Jan Senior Member

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    If she has got funding for MEGA, I think we should do everything we can to encourage a patient boycott, she will persecute us with the data she extracts from all those questionnaires with paper after paper of BPS bollocks. It would be years and years before anything medical started happening.

    I don't know how she has the audacity to continue research into ME after she has slandered the patients, and then the muppet thing. She treats us with utter contempt and does not believe the disease is physiological. She is poison, I don't know how you can bear to be at the same table as her @charles shepherd, it's a little more than a difference of opinion when she attacks us publicly, and those who defend us. That was a step too far, I don't understand why you can't see that.

    I also don't understand the point of the CMRC conference when UK ME services are run by Crawley and Co. They don't give a damn about biological research, it will change nothing and it won't help one patient. What it might do is encourage some students to join Esther and the bps bandwagon.
     
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  18. Esther12

    Esther12 Senior Member

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    Surely it depends on the specifics? In a previous year I saw some PhD student who went on to promote quackery with Crawley thanking MEA for funding their trip to the CMRC conference. To me, that sounds like a bad use of MEA money.

    A number of the UK researchers there seem to have connections to PACE/Crawley/etc. I've not seen any of them speak out about the PACE trial, or the way that patients have been smeared for speaking out about flawed research and spun results (including by researchers at the CMRC). It seems that the CMRC has become a way of promoting 'collarborative' moral cowardice amongst UK researchers under the guise of 'working together' in a 'big tent' to help 'move things forward'. While patients suffer.
     
    Last edited: Aug 19, 2017
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  19. Esther12

    Esther12 Senior Member

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    I don't think that 'physiological' thing matters, and I'd sit at a table with anyone, so long as I could speak honestly and challenge them openly. I do not understand how the MEA can let Holgate claim that Crawley has the full support of the CMRC board after she smeared patients and Tuller when she tried to present herself as heroic for standing up against FOIs and 'libelous blogs'. To accept that seems very worrying.
     
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  20. Jan

    Jan Senior Member

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    That was what I was trying to say, only not nearly so eloquently! I think belief in at least the possibility that the disease is physiological is absolutely crucial for a study such as MEGA. The major concern the patients have is that she will skew the recruitment of patients and the results to fit her model of 'chronic fatigue'
     
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