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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Awesome video on Fibromyalgia

Discussion in 'Fibromyalgia' started by barbc56, Mar 26, 2015.

  1. barbc56

    barbc56 Senior Member

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    This video is very informative, insightful as well as validating that FM is not psychological. The physician, Patrick W. Wood MD, Pacific Rheumatology Associates, Chief Medical Officer Angler Biomedical Technologies, uses clear understandable language, hence IF WILLING, capitalization deliberate, would be useful for family, friends and the general public. It was made five years ago. I would love finding updates about this guy's research as well as the other research he mentions.

    The video is in three parts. While the third part is interesting, for practical purposes, you could probably skip it. Edit. After watching part three, I would recommend at least the first part as that's where he talks about opiates and something else but can't remember what.:rolleyes:

    BUT, ignore the very last patient case. Fortunately, he says this happened in this particular case but not the best example to use.

    Some of his topics I found particularly interesting as they pertain to me are: Why opiates often don't work for FM patients. The link between FM and Willis-Ekbom disease, RLS, also known as restless legs syndrome as both are dopamine related. The link between low ferritin levels and pain.

    My personal favorite, paraphrased here, "If your doctor says FM is not real, get in his or her face, laugh and get another doctor!".

    I would think some of this would be applicable to me/cfs which he mentions as a comorbid condition. He uses this term.





    Barb

    ETA

    One caveat to remember is that while brain scans are informative, you can’t expect to look at one without knowing the patient's condition, and give a definitive diagnosis.
     
    Last edited: Mar 26, 2015
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  2. barbc56

    barbc56 Senior Member

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    One area I wish he had addressed in more detail is sleep disturbances. However, this is fairly comprehensive.
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    Very good, Barb. I just wish they knew how to treat it. Dopamine? My switch was hormones. I also had whiplash in 2005-hit from behind at a red light.
     
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  4. barbc56

    barbc56 Senior Member

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    @Misfit Toy

    I read somewhere that when FM is triggered by a physical stressor, the number one type of physical injury is whiplash. For me it was a complicated broken arm. That being said, there's probably something else going on as not everyone who has a physical injury ends up with FM.

    I have no idea how scientific or true the above statement about whiplash is nor if it can also be applicable to chronic pain disorders.

    My daughter had migraines during her teen years and early twenties and most likely hormone related. They eventually resolved, long story, but they were horrible. So sorry you are going through this.

    Take care.

    Barb
     
  5. Marco

    Marco Grrrrrrr!

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    Hi @barbc56

    I came across this video the other day (Dr Andrew Holman) which covers similar areas (sleep, dopamine) plus some results from open label trials :



    Not one for friends/relatives but might be of interest to individuals with fibro.
     
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  6. starlily88

    starlily88

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    @barbc56 Thanks so much for sharing this. This doctor explains so very eloquently what FM is. The Brain
    Scans and PET scans are so informative. I was awestruck at every single symptom I have being explained.
    He did take my breath away with the poor mouse with no dopamine and morphine being burned OMG
    I never gave much thought to the FM part of my CFS till watching this. I wish every Dr who is a non-believer could watch this video. Kudos to you!
     
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  7. barbc56

    barbc56 Senior Member

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    @Marco
    Thanks! I'm looking forward to watching this and have this at the top of my to do list!

    @starlily88
    I know. Poor mice.

    Barb
     
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  8. traray

    traray

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    Excellent. Thanks for sharing. I have long thought my FM was in my brain and specifically that I needed more dopamine. It is very exciting to have this confirmation!
     
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  9. Marco

    Marco Grrrrrrr!

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    I completely forgot that restless leg was the key to him trying dopamine agonists so even more relevant hopefully!
     
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  10. barbc56

    barbc56 Senior Member

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    @Marco

    Dr. Wood and Dr. Holman work at the same research center!

    I would like to find more about the role of dopamine in comparison to other chemical processes related to FM.

    Maybe @Jonathan Edwards whose specialty is Rheumatology, could weigh in or point to some related sources on the dopamine aspect of FM without having to watch the time consuming videos, as he is probably overloaded with all the questions put to him on PR.

    I think I got a bit sidetracked here as Dr. Wood also mentioned other mechanisms to explain what is going on in FM. But I found the dopamine aspect especially interesting.

    Barb
     
    Last edited: Mar 27, 2015
  11. Marco

    Marco Grrrrrrr!

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    Thanks Barb. That makes sense.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I watched the Holman video, which is well presented but the clinical trial data are so far inconclusive and until there is a hard indicator from such a trial I think the hypothesis remains one speculation amongst many. The existence of several receptor subtypes with subtype specific agonists makes the idea appealing but it does seem to me that people are going in with open trails that do not make best use of resources in nailing things.
     
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  13. barbc56

    barbc56 Senior Member

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    @Jonathan Edwards

    Thanks!

    Barb

    ETA

    I haven't had a chance to see the Holman video.
     
    Last edited: Mar 27, 2015
  14. Kina

    Kina Admin Support Staff

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    I just watched parts 1 and 2. We need more doctors like him. Very interesting. Thanks @barbc56
     
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  15. barbc56

    barbc56 Senior Member

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    @Kina

    I liked the straightforward way Dr. Wood explains FM. There were actually tears in my eyes when he made several points about FM. Validation can be very therapeutic. Right now I especially needed to see something that does that.

    The way he presents how the nervous system is involved coincides with what my neurologist says but I don't remember what my neurologist said about dopamine unless referring to my RLS.

    My PCP actually mentioned the possible link with RLS but as she says it's too early to say it's definitively connected.

    Yeah, he does have his pet theory but I don’t think it's mentioned until half way into the third part(?). Still very interesting and I guess time will tell.

    Barb

    .
     
    Last edited: Mar 27, 2015
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  16. voner

    voner Senior Member

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    I remember seeing those doctor Wood videos something like four or five years ago? I remember trying to see if he saw patients and he had set up a practice with Dr. Holman up in Washington, but they told me that he was no longer seeing patients and was just consulting with other doctors. Sometime later he seemed to disappear from the lecture circuit. I always wondered what happened to him because that video is so engaging. I did a search and I found this little blurb. He appears to be in private practice again in the United States.

    http://fibromyalgiasupport.ie/?page_id=4
     
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  17. jason30

    jason30 Senior Member

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    That same path happened to me. My doc gave me a dopamine agonist (Pramipexole (Sifrol®)) for my restless legs. But later on it wasn't restless legs but Fibromyalgia. And this dopamine agonist was the only med (apart from painkillers) which lowered my Fibromyalgia symptoms a lot.
     
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  18. starlily88

    starlily88

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    Since you did extensive clinical trials on the use of Rituxamab in rhematology, could you post a URL to us that shows us what your very own conclusive clinical trial data you ran showed so that we may see the difference between the "so far from conclusive" data from Holman compared to your very conclusive data. We would so appreciate that. Thanks
     
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member

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    You will find the proof of concept study at
    https://www.researchgate.net/public...tuximab_in_patients_with_rheumatoid_arthritis

    on my ResearchGate page. I think you have to click on the fulltext page icon.

    The difference between this and most of the studies Dr Holman cites is that his studies, like PACE, are open label, or unblinded, with subjective endpoints. Studies of that sort are open to reporting bias and are basically no use as hard scientific data. The RA rituximab study was blinded and had objective endpoints. Even so you can pick holes in it but there have been at least four major blinded trials of this sort ( e.g. 'DANCER' and 'REFLEX' trials) and they give the same pattern of response. The other reason I am certain rituximab works is that you get stereotyped objective changes in bloodwork over a stereotyped time course. You can track the mode of action in detail. Holman also mentioned a blinded study but the outcome was not statistically significant if I remember rightly - so again this is no good as hard evidence. Dr Holman himself is very open about these shortcomings and I am sure he would agree that what he presented is so far inconclusive.
     
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  20. starlily88

    starlily88

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    Dr. Edwards - As you know, one has to "join" researchgate in order to read your study. I could only read a brief abstract - which shows when you hit on Fulltext. I do belong to JAMA online. Is your study published in JAMA?
     
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