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Dr Nacul speaking tomorrow (Saturday), livestreamed

Discussion in 'ME/CFS research news' started by Milo, Sep 21, 2019.

  1. Milo

    Milo Senior Member (Voting Rights)

    Register for a live presentation from Dr Luis Nacul Saturday 2:15 PM Pacific time (5:15 PM Eastern time)


    Has ME/CFS research helped clinicians and patients? Can we do better?
    Join us for a presentation & Q&A with DR. LUIS NACUL,Medical Director for BC Women's Complex Chronic Diseases Program (CCDP)

    Dr. Nacul is the new Medical Director, BC Women’s Complex Chronic Diseases Program (CCDP). He is a doctor and general practitioner, with training across medicine, epidemiology and public health. Dr. Nacul was Clinical Associate Professor and researcher at the London School of Hygiene and Tropical Medicine in London, United Kingdom, and led the CureMEteam and the UK ME/CFS Biobank. Read more about Dr. Nacul

    This presentation is open to the public in person and via Livestream. The event will also be recorded and made available on our website.

    Registration for this event is free, but donations are always welcome.
    Last edited: Sep 21, 2019
    Annamaria, JaneL, Lisa108 and 16 others like this.
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

    I hope we can
    Annamaria, Lisa108, rvallee and 3 others like this.
  3. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    ukxmrv, Willow, Lisa108 and 3 others like this.
  4. Lisa108

    Lisa108 Senior Member (Voting Rights)

    Time Zone Converter here
    Trish likes this.
  5. Milo

    Milo Senior Member (Voting Rights)

  6. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    I watched this and am now feeling a bit deflated.

    Luis Nacul clearly cares. But I think the impression that most listeners who aren't deeply familiar with the analysis of the PACE trial and lack of evidence for GET would take from this talk is that GET might be useful for some people with ME, but not the severe ones. The fact that the PACE results were just subjective responses to questionnaires wasn't mentioned. There was acknowledgement that pacing is most important and that treatment should be a joint decision and that activity that exacerbates symptoms shouldn't be done. But, I don't know, it just didn't feel clear enough.

    And there was quite a bit of talk about there being separate conditions, the people with severe ME and the rest. And I wasn't clear, but it seems like the specialist ME clinic doesn't put much emphasis on differential diagnosis. For me, I can get the information about how to pace and how to have good sleep hygiene online or from patient support groups, but what I would really want to know from a specialist ME clinic, if I and my son are going to sit happily with an ME diagnosis while we wait for a treatment, is that everyone is as certain as they can be that we do in fact have ME.

    Given that Luis is on the NICE committee, I feel a bit worried that the new NICE guideline will just say that patients should be involved in choosing their treatment and that they shouldn't do activity that exacerbates symptoms, but not actually say that there is no evidence supporting the use of graded exercise (or activity) therapy for people with ME.

    I'd like to know what others thought. Maybe it's just me.
    Helene, Dolphin, Annamaria and 16 others like this.
  7. Milo

    Milo Senior Member (Voting Rights)

    He does. Great ally to have.

    To be fair he was addressing to a knowledgeable group of patients but did not go through details or deep into the science.

    Much agreed, i would add that we need research and better evidence.

    The biggest problem we face in establishing guidelines is that there is little to no evidence, and we haven’t yet teased out subgroups or gotten a biomarker. Health care is usually based on evidence. We have no evidence. Or very little. So much work needs to be done!
    Helene, MEMarge, Annamaria and 9 others like this.
  8. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    Nicely put @Milo.
    Yes, that was the overwhelming feeling I came away from the talk with. That even a lot of the things that Dr Nacul was saying are known, such as (and I'm just going by memory here and paraphrasing) 'the illness changes over time, from an immune system in over-drive to an immune system, and metabolism in general, shutting down'), aren't known with any certainty.

    So, it's probably mostly that reality that's a bit depressing, rather than Dr Nacul.
    Dolphin, Annamaria, MEMarge and 6 others like this.
  9. Milo

    Milo Senior Member (Voting Rights)

    Uh uh. Dr Nacul knows what we don’t know. It is good knowledge to have. But so many are left in limbo out there, around the world, where most doctors don’t know what they don’t know.
    Helene, MEMarge, Annamaria and 6 others like this.
  10. darrellpf

    darrellpf Established Member (Voting Rights)

    The program at the Chronic and Complex Disease program in Vancouver has an over two year waiting list. It seems to concentrate on having the patients from all of British Columbia travel to the hospital. They seem to run small groups of patients through courses to help them deal with ME/CFS. The waiting list is very long and it isn't a good fit for anyone outside of Vancouver.

    I think the bigger problem is the complete lack of understanding on the part of GP's on the disease and its management. Most family doctors, if you can get one in BC, simply don't have the time or interest to look at even the most basic of literature. Alison Bested (former head of the clinic, now at the Klimas facility) produced a very good clinician summary in 2015 which is still very accurate today. The latest "Diagnosing and Treating Myalgic Encaphalomyelitis/Chronic Fatigue Syndrome" from the US ME/CFS Clinical Coalition" (again with Bateman, Klimas, Bested) is a six page document and a great start.

    I'd prefer to see the clinic put a heavy emphasis on enlightening the GP's, then let the GP's do the appropriate management except in special cases.
    Helene, rvallee, Annamaria and 5 others like this.
  11. Milo

    Milo Senior Member (Voting Rights)

    The wait list has gotten worse than 2 years.

    I think the biggest tragedy is the idea that GP’s can take on such complex disease and assuming that they do. Most don’t. Most don’t want to get caught with a patient with horribly unmet health care needs, legal paperwork to be done, and most of all getting educated by their patients. Most do not have time to get educated by other doctors about a disease they may not encounter on a regular basis in their practice.

    Lastly, the family doctors are not likely to do clinical research that is much needed to provide evidence that will inform their actions on best practices. We desperately need clinical trials, basic and clinical research, biomarkers, and better understanding on the disease. We need everything.
    Helene, MEMarge, rvallee and 7 others like this.
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    You must bear in mind that he can't say anything about the NICE process or appear to have rigid views about the evidence that might be considered biased.

    Luis can't afford to be accused of having prejudged the evidence, in case that weakens his position on the committee or results in him being asked to leave if, say, there's a vote.

    To be honest, I'm more surprised that he gave the talk at all, rather than waiting until next year, because there's so little he can freely say at this point re: treatments.
    Helene, Tilly, MarcNotMark and 11 others like this.
  13. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Some very useful comments and observations here.
    I would like to add a few more from our experience Suffolk with Dr Nacul.

    In effect I would like to defend him regarding the Livestream.
    Some of you will know the gist but it is useful to repeat some of it in this current NHS and (NICE) context. (Mods sorry if this is off topic here?)

    Despite our attempts like others, such as Hope4 NI have found, partnership workings hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability. I am sure our experience is echoed around the country within support groups, many who have sadly closed down or given up.... But not Joan and NI who won't go away!!!!

    DR Nacul's lecture, in my view, was as much of a reality check and not an attempt to raise false hopes amongst the ME and CFS community in respect of the statutory services for ME (UK NHS) or elsewhere ie Canada etc.

    A little Suffolk personal background to DR Nacul's presentation;

    Initially, When Luis responded to the advert issued in 2015 for a new service contract, (with a LOT of arm twisting and 'look here sunshine' moments from patient groups and Joint Health Overview and Scrutiny elected members) by the 'Service provider' East Coast Community Health, ECCH, for 'an expression of interest' for the post of a consultant lead for Norfolk & Suffolk specialist ME Service.

    Dr Nacul and his LSHTM team, bent over backwards to accommodate the vagaries of the Commissioning/contract/ and provider process (as well as the active hostility, feet dragging and downright hostilities to this way forward by the Norfolk and Waveney CCGS....and of course the reluctance of ECCH who kept changing the goalposts as well as moving the starting point....)

    Let's remember the Provider is a CIC Community Interest Company who are in effect answerable to no one in the public just to Companies House. So it's come down to the situation not just being about the money and costs, but also, in our view, a greater desire for ECCH to protect their business model, rather than serve their wider community.
    (Suffolk get the short straw from them with 1 access outpatient point in Suffolk and 6 in Norfolk and Waveney!!!)

    After a lot of background research and work, Waveney CCG (but not Norfolk and Suffolk) then turned round and said there to be a 'conflict of interest' in Luis applying finally for the job as he had done the Public Health Feasibility Study ! It was a disgraceful way to treat any physician (who did the 2016 study, because he needed to show 'due diligence' regarding the consultant lead post), as they had changed the job and removed any monies to fund it after the advert was out!
    And ECCH management did not wish to go this route anyway......

    Then we had the 2017 NICE 'no we won't , yes we will' review saga.......! http://nandsme.blogspot.com/2018/08/response-to-nice-draft-scoping-document.html
    The committee only will allow practicing clinicians in effect at that time Luis was not providing any ME clinical services, so would not be eligible to apply as a practicing GP.

    The we continued our local negotiations with Suffolk CCGs commissioning and contracts team who have been so supportive and helpful- a little light in a long and dark NHS/CCG Tunnel.....!
    Finally persistence paid off and 'reluctance' i.e. cost pressures (on the part of the GP organisation in Suffolk ) was dealt with. Again down to Dr Nacul's generous accommodation of the situation.

    Dr Nacul then starts the Suffolk Specialist service in 2018 and can apply for the NICE Guideline Group. http://nandsme.blogspot.com/2018/07/dr-luis-nacul-internationally-respected.html

    Finally what was written to NICE (by me with help from lots of others, on behalf of LocalME) becomes our new reality for ME and CFS Services.........

    Our Severely affected member wrote,
    "It is a long document, but is worth reading, especially the general comments at the end which deliver perspective on service change from the experience of the work that has been going on in Norfolk and Suffolk for many years especially:

    • NICE should not make things worse than they already are
    • The needs children and young people are of considerable concern with 'pop up clinics' with no specialist oversight, parents accused of FII and the failure of health and social services to deliver appropriate, co-ordinated care
    • The needs of the severely affected have also been neglected
    • The lack of accountability for services for people with ME & CFS
    • The importance of the patient experience
    • How in Norfolk and Suffolk the aims of partnership working have hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability"
    Amw66, rvallee, Annamaria and 5 others like this.
  15. Joeblow604

    Joeblow604 Established Member (Voting Rights)

    Do you know how long the wait is these days?
  16. Tilly

    Tilly Senior Member (Voting Rights)

    Maybe it has more to do with getting out there and getting a voice so that ME will be heard come the day.

    I think for him or any other person within the ME research community, they need funding and they need the ear of the establishment and that is a kin to walking on eggshells, on a tightrope with no safety net over Niagara falls.
    NelliePledge and Suffolkres like this.

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