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ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 18, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    ME/CFS Research and Management meeting

    reMEmber shine the spotlight on ME/CFS research and management | Dr Shepherd recalls highlights of Burgess Hill meeting | 14 May 2016


    Thanks to everyone who came to this three-hour meeting in Burgess Hill, Sussex, on Saturday May 14. The meeting was organised by the Sussex-based ME/CFS charity ReMEmber and there was hardly a spare seat left in the room once we got started! There were presentations by consultant immunologist Dr Amolak Bansal (research) and ME Association medical adviser Dr Charles Shepherd (management).

    This is a summary of key points on both research and management – especially those that relate to the way in which some of the current research findings on infection, immune system dysfunction, muscle/mitochondrial function, etc, link in to practical patient management. The summary also includes information from the meeting on the role of stress, activity management and drugs that may affect the underlying disease process in ME/CFS (e.g. antivirals, steroids and rituximab).

    The meeting opened with Dr Bansal’s presentation on research.

    This was followed by an excellent patient interaction section on what people want to have included in a hospital-based ME/CFS referral service in Sussex.

    The final session was devoted to practical aspects of Management.

    Full report here:

    http://www.meassociation.org.uk/201...ghlights-of-burgess-hill-meeting-14-may-2016/
     
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  2. Hutan

    Hutan Senior Member

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    Thanks, it's an interesting read.

    I don't think I had understood that possible cause for the recurrent sore throats (and presumably sore glands) - both of which I get when I overdo things. In the first couple of years I had recurrent cold sores - as in one would have nearly healed when another one would come. A year on Valtrex seems to have quieted that down. I no longer take Valtrex and now hardly ever get cold sores.

    So far so good, Dr Bansal.
    But from there on I started to feel uneasy. And then decidedly stressed, Dr Bansal, about your attitudes to stress as a causal and perpetuating factor.
     
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  3. charles shepherd

    charles shepherd Senior Member

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    I ought to edit this sentence to say:

    It has been suggested that viral reactivation could then be a cause of some of the infective type symptoms such as sore throats.

    (Because this link is speculation in our present state of knowledge - not hard fact.)

    If it is correct it probably helps to explain why antiviral treatment with drugs like valganciclovir do appear to be effective at reducing some of these symptoms in some patients. CS
     
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  4. Hutan

    Hutan Senior Member

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    To continue..

    So, we feel pain because we aren't using our muscles.

    Splutter..

    More spluttering. I thought even the hardcore psychobabblers were admitting that PWME don't actually seem to have a history of more past trauma than anyone else.
     
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  5. Hutan

    Hutan Senior Member

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    And the last one for completeness..

    So, chronic stress again.
     
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  6. Hutan

    Hutan Senior Member

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    I should add that Charles Shepherd's section on management is useful and well informed as you would expect. But, in my hypervigilant stressed state, I had trouble with the following.

    If I had more energy, I'd do more activity. Use the research funds on finding out why I don't have enough energy, - not fiddling around the edges making better stretching exercises.

    I think I had better go visit @Valentijn's garden thread before bed so that my stress doesn't disturb my sleep.
     
  7. charles shepherd

    charles shepherd Senior Member

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    RE STRESS

    With regard to stress, two points that Amolak was making were that:

    1 Chronic on-going stress can disrupt the HPA axis and cortisol production. So when a significant acute stressor then appears - eg an infection - a past history of chronic stress could be creating fertile ground for an infection to trigger ME/CFS

    On a personal basis, I was working one of these dreadful 1 in 2 rotas (ie working every day and every other night) that docs used to have to do in a very busy hospital

    So I think that undue physical and mental stress (which I didn't actually have any obvious problem with at the time) may have acted as a co-factor when an episode of chickenpox (which I caught from a patient) tiggeed my own ME

    2 In addition, once ME/CFS has occurred, any form of on-going chronic stress - relating to problems with doctors, family, benefits, finances etc - is going to have a negative impact on any possible recovery proces in ME/CFS

    Nobody was saying that ME/CFS is another manifestation of a stressful illness, or is a stress related illness. But the role of stress and immune system stressors - acute and chronic - on the body cannot be ignored in ME/CFS and where present they do need to be addressed in the overall management of someone with ME/CFS
     
  8. charles shepherd

    charles shepherd Senior Member

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    I would not agree that research into activity/energy management is just 'fiddling around the edges'

    We need research into all aspects of the underlying disease process in ME/CFS, as well as all aspects of management - including how to best deal with activity/energy management in relation to stage, severity and variability of the illness

    In particular, we need research into one of the big unknowns relating to activity/energy management: i.e. what should doctors be advising patients to be doing in the very early stages (i.e. weeks) of a post infectious fatigue syndrome, or what appears to be ME/CFS, and is there any effective way (in relation to activity management) of reducing the risk of post infectious fatigue progressing into ME/CFS, or what may well already be ME/CFS becoming more severe and persistent
     
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  9. duncan

    duncan Senior Member

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    Yeah, I'm thinking this is dangerous territory, and the "we need to continue to look at ALL possible factors" approach - although sounding nice - may be casting a blind eye to history and context.

    Stress/trauma is fertile ground for the BPS school. We ignore this at our peril. And it IS likely irrelevant or secondary. It's life's debris and we all have it. The BPS school loves to cherry pick from that debris.

    Increasing activity levels also dovetails with their platform. We know to learn our PEM thresholds, and to do this via pacing, etc. To ignore THAT could leave us in worse shape than we already are in.
     
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  10. charles shepherd

    charles shepherd Senior Member

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    Good points from the interactive session half way through:

    INTERACTIVE SESSION: WHAT DO PATIENTS WANT FROM A GOOD HOSPITAL BASED ME/CFS REFERRAL SERVICE?
    Moderated by Bill and Janice Kent from ReMEmber


    Members of the audience listed all the key components that they want to see included in a hospital based referral service for people with ME/CFS:

    1. All patients to be examined by an expert consultant physician
    2. Prompt referral and accurate diagnosis
    3. A domiciliary service for the severely affected
    4. A clinical nurse specialist for the severely affected
    5. A specialist occupational therapist
    6. A dedicated service for children with ME
    7. Recognition from all these practitioners – and GPs – that this is a biomedical condition
    8. Compulsory re-training for all healthcare professionals who provide services to ME patients
    9. Better access. Some clinics are located upstairs in buildings without lifts, and some have no parking facilities (or inadequate parking)
    10. Access to a specialist doctor for more than the 12 months currently offered before being referred back to their GP who is probably not knowledgeable
    11. An annual review like that offered by Stoke Mandeville to spinal injury patients… This would allow ME patients to contact their ME unit (e.g. by phone) if they should encounter problems their GP can’t help with.
     
  11. Hutan

    Hutan Senior Member

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    The thing is, with hindsight, just about anyone could identify stresses at any particular point in their life. Final year exams at secondary school; parents divorcing; study at university; demanding job with difficult co-workers; having a baby; having three kids under five and working; spouse with cancer; moving overseas; having your child die; training for the olympics; financial problems; divorce; and so on ....

    Most people's lives are a series of challenges. But not everyone gets ME/CFS. So pointing to stress as a cause (as Dr Bansal does repeatedly) is not very helpful. (edited for spelling)
     
    Last edited: May 19, 2016
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  12. skipskip30

    skipskip30 Senior Member

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    As long as the research is fair and well designed without any spin or bias *cough* pace *cough* then I agree. Activity management has a huge effect on most of us.

    Some of the things Hutan highlighted are worrying but that doesn't rule out future (sensible) studies of energy management for me.
     
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  13. Hutan

    Hutan Senior Member

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    Well, what you wrote that prompted my comment was:

    So, that was specifically about increasing physical activity, not pacing or energy management.

    I remain of the view that the most important research right now is understanding what causes the disease. Until then and until we can accurately identify people that actually have the same disease, any studies on whether rest or activity changes the outcome of the illness is severely compromised. How can you possibly know if the population you are studying all has the same disease?
     
  14. Sasha

    Sasha Fine, thank you

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    I hope we're not nitpicking our way through your very useful material but I have a slight concern about the bolded text, in that it may be taken to imply that the sky's the limit, with being able to gradually increase physical activity; or indeed, that all PWME can gradually increase their activity at all.
     
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  15. msf

    msf Senior Member

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    This might be an unfair comment, Dr. Shepherd, but from the outside it does seem to me that the rational scientists and doctors who get involved in ME in the UK also have to be politicians, and speak like politicians.

    For instance, I never hear anyone castigating PACE like Coyne does.
     
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  16. voner

    voner Senior Member

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    an added agrument to Hutan's response:

    Given the very limited amount of ME/CFS (or fibromyalgia for that matter) research money available, I would like those $ going into research for causative physical factors of the disease, not management of the disease or psychological related factors of the disease.
     
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  17. charles shepherd

    charles shepherd Senior Member

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    Perhaps I should have highlighted very flexible as well!

    Seriously though, when it comes to activity/energy management, one place where we could start is by looking at what strategies people have used (successfully and not successfully) in the very early stages of ME/CFS - i.e. in the days, weeks, months following the onset of their ME/CFS

    Most of my medical colleagues don't have a clue when it comes to advising people on activity/energy management when an infective episode has triggered some form of persisting post infectious fatigue, or the possibility that they may have developed ME/CFS

    We really do need to be adding research into this crucial aspect of very early management into the ME/CFS research portfolio

    And if anyone wants to approach the MEA Ramsay Research Fund with a sensible research proposal on activity/energy management in the very early stages of ME/CFS or a PVFS, it will be given very serious consideration
     
  18. lnester7

    lnester7 Seven

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    A lot has to do with the viral reactivation in my book, when my Parvo reactivates it hurts A LOT and in certain joints I can tell you the virus that is active based on the pain pattern (symptoms) . Always gets confirmed by labs.
     
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  19. charles shepherd

    charles shepherd Senior Member

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    Parvovirus and ME/CFS - an interesting sub-group?

    From the Research (Infection) section in the MEA purple booklet (2016 edition):

    In one study, parvovirus B-19 associated ME/CFS developed in 4-13% of symptomatically affected persons (Kerr et al 1996). In this group, elevated levels of tumour necrosis factor alpha and interferon gamma were reported – findings consistent with chronic immune activation (Kerr et al 2001). Administration of intravenous immunoglobulin was reported to be an effective form of treatment in some of these patients where it normalised cytokine dysregulation (Kerr et al 2003). But there has been a higher incidence of adverse effects in ME/CFS patients with conventional doses of intravenous immunoglobulin in other series – see section 7:4.10. For a systematic review of neurological aspects of parvovirus infection, see Barah et al 2014.
     
  20. JaimeS

    JaimeS Senior Member

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    Huh. I tested positive for that one too, @lnester7... and muscle and joint pain is a problem, especially in the legs.
     
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