The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Mark Van Ness presentation at ME/FM society of BC

Discussion in 'General ME/CFS News' started by Kyla, Jun 2, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    waiting, AndyPR, Woolie and 8 others like this.
  2. Justin30

    Justin30 Senior Member

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    Im glad Mark came to do this but 25% to one third are housebound beddridden.

    This envelope is sometimes so difficult to find when your ANS goes all over the place and BPM is never cosistent.

    We know PEM exists we know that that we have to PACE but why?

    The second we got this illness it was apparent.

    I get this and is an important part of the picture, very important.....but this leaves out a significant proportion of patients, and does not address paients that PACING doesnt seem to have an effect on, does not take into account wax and waning of symptoms regardless of activity....Basically the ones that are really sick....

    This major Gap in research on the people most ill is a problem.....further CPET can and has lead to permanent crashes in some for years of complete disability....

    There was a Pole taken somewhere else where overtime.....over 70% Severe Worsening of Symptoms overtime...this was the patient community saying this...

    So...I appreciate the work it is important but telling us to keep pacing plus some tips and tricks does nothing for me.....

    He touched in Mito issues, blood volume issues and damage to the anerobic system....that is what needs to be figured out...

    The women that spoke about her daughter and never knowing and being fearful and the difficulties of Pacing can be like a full time job....

    she is right Pacing is needed but tends to dull down the severity of the highly debilitating, life altering aspect of this crippling illness.

    Telling us to PACE gives us a band-aid solution.

    Gives countries an excuse that their is a viable treatment and suggestion for improvement....for some maybe..... those stats are 10% full time work, less than 20% part time work and the other 70 that includes 25% completely bedridden and house bound.....those are are terrible stats

    I know its being worked on but talks like this, although I know are good and are beneficial to some....in my eyes make an important point that.......

    The Health Authorities, Governments, Drs, Insurance Companies and others have used to not FUND the illness.....

    I want to know whay my Mitochondria arent working? I want to know why I have Dyautonomia? I want to know why oxygen is not being delivered to my organs? I want to know why my Anerobic system is damaged?

    Thats what we want to see studied they have been telling us to PACE for years....
     
    K22, Woolie, shannah and 2 others like this.
  3. AndyPR

    AndyPR Cookies for Tired Sam

    A really good, if slightly over long, presentation on doing more with less and some theories on why exactly we need to do that.

    I understand the frustration that @Justin30 expresses above but to be fair, right at the start of the presentation it's made clear that what is being discussed is aimed at higher functioning patients, and that it is essentially coping strategies, not a cure. Yes, absolutely, research should have been done and should be done to find all the answers but while they remain unanswered presentations like these can be of use to some of the patients out there.

    I just enjoyed it being talked about in an honest informative way, rather than being told exercise is good, I should do some, which sums up the advice I've ever been given before.
     
    mango, Valentijn, Justin30 and 2 others like this.
  4. Justin30

    Justin30 Senior Member

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    @AndyPR I do appreciate this Dr coming down.

    Out supposely 400k ME/CFS Patients 100k are confined to home or bed.

    This being said polls done online in other forums and what some literature I have come across patients can and do result in being in this state as years pass by. Meaning the mild, moderate patients become severe.

    This doesnt mean all end this way as some get effective treatment and some have spontaneous remissions from what I have read.

    This leaves a large preportion of patients with a shear lack of biomedical research, treatment and help.

    We have known about exercise intolerance for a long time but there has to come a tipping point where we move past pacing and into a category of a life altering medical disease that requires medical interventions and studies.

    I appreciate the reserch as it is needed but pacing, energy envelope and CSS needs to take a back burner and funds need to be allocated for dealing with this disease.

    Im not trying to get after you this seems to be a harsh reality that must be addressed so peoples lifes are not destroyed by the harms that have resulted over 70yrs.
     
    K22 likes this.
  5. Sea

    Sea Senior Member

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    To be fair, Van Ness is an exercise physiologist, not a mitochondrial or medical doctor or researcher. While it may be true that what he offers is a bandaid solution, I think it is the best we can expect from him until researchers untangle this illness. I appreciate genuine attempts to help us gain the most function we can without deteriorating and within the limitations of the illness. No where does he claim it leads to recovery.
     
    waiting, Justin30, Valentijn and 4 others like this.

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