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What research do you want to see?

Discussion in 'General ME/CFS news' started by JohnTheJack, Jul 7, 2018.

  1. JohnTheJack

    JohnTheJack Moderator Staff Member

    This may be done elsewhere on the site, but I thought it would be interesting to see what research patients would like to see.

    Perhaps if there is enough then we could do some sort of briefing paper with ideas for Chris Ponting.
    Kitty, Pen2, ladycatlover and 4 others like this.
  2. JohnTheJack

    JohnTheJack Moderator Staff Member

    My own suggestion:

    Current research seems to focus on finding a biomarker: looking at what is going wrong with ME patients and then hoping this will explain the process and in time a way of fixing things

    Even the best modern techniques do not reveal everything that happens in the body.

    As we've discussed elsewhere, many of us think ME is not just one illness.

    I would, then, like to see research approach ME from the other direction.

    There is no mystery to me how I got ME: I got an URT virus and then ignored it. I continued to lead my normal, very active life. Indeed, one week after infection I ran to the track and did a 'kill or cure' session to clear my head.

    My symptoms are mainly in two areas: My immune system is shot so I pick up infections easily and take much longer to recover from them. My brain is 'damaged': it's not regulating my body or my emotions and its cognitive functioning is awful.

    Right from the beginning, the ME (or 'post-viral syndrome' as then diagnosed) was seen as a result of virus + activity. My symptoms have much in common with encephalitis, post-encephalitis syndrome and post-concussion syndrome.

    It's my view that because I didn't rest and so didn't give my body the chance to recover, the virus damaged my immune system and 'leaked' into my brain, that my ME is a sort of low-grade encephalitis.

    I know many who have seen this link: that their ME came about from a virus + activity.

    So, the research I have been waiting for for 30 years is:

    What happens to the body when infected by a nasty virus if the person doesn't rest but remains active and tries to push through the illness? Would the immune system be damaged? Could the virus pass through the blood-brain body? Could the symptoms some of us experience be the result? Is that what ME is for some people?
    Annie, Kitty, RuthT and 14 others like this.
  3. Alvin

    Alvin Senior Member (Voting Rights)

    Sometimes i think the fight has to be taken to the problem, so in that vein research on why its so hard to accept scientific evidence and instead treat patients with harmful therapies and believe they are imagining their symptoms when there is clear evidence they are not.
    Kitty, Pen2, ladycatlover and 3 others like this.
  4. alktipping

    alktipping Senior Member (Voting Rights)

    I still like ramseys theory about m e being an atypical version of polio but that was politically unacceptable because of all that money spent creating the polio vaccines .I really don't understand the political reasoning behind that after all they created vaccines against 2 of the 3 viruses why could they not carry on and find one that worked on the 3rd polio causing virus. perhaps they did not care for the much smaller numbers involved cost/benefit ratio was probably to small.
  5. JohnTheJack

    JohnTheJack Moderator Staff Member

    OK, so what research do you want to see?
    Andy, adambeyoncelowe and alktipping like this.
  6. alktipping

    alktipping Senior Member (Voting Rights)

    it is far to complex for just one line of inquiry but any research that improves our understanding of how the human immune systems work and interact with other systems would be beneficial to every body not just people with m e . but on a more personal level I would like a definitive test that says this is the disease you have and more importantly ignorant jackasses in the medical profession would not be able to say it doesn't exist. at least then they would be forced to give you the best per patient palliative care .
    Kitty and Tia like this.
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

    I would really like to keep this thread to proposed research if possible.
  8. Diwi9

    Diwi9 Senior Member (Voting Rights)

    1. Autopsies, looking at nervous system tissues.

    2. Not sure how this would work, being able to monitor brain waves through out the course of a week, where a patient can concurrently document what is happening that can be synced with the recorded data.

    ETA: Per #2, I go into strange cognitive states (coma-like) prior to and during crashes, sometimes these things happen as I fluctuate through out the day. When we are out of the house on "go" mode, this doesn't happen...I think a lot of research is not capturing the lived experience.
    Kitty, andypants, Keebird and 2 others like this.
  9. Sarah

    Sarah Senior Member (Voting Rights)

    I feel similarly wrt onset being linked to not resting sufficiently during a trigger infection or otherwise. For me, the same set of acute symptoms occurred twice with a gap of several months between. The first time, I recovered within days. The second, I tried to get back to work and normal levels of activity before I was physically ready, and ME developed as a result.

    I would be interested in research that looks at host metabolic responses during an infection as apart from mechanisms of pathogenic hijacking specifically in infections like EBV (or perhaps more practically in bacterial infections) that are documented to have increased rates of resultant ME/CFS, and if and how findings correlate to metabolic findings in an increased amount of research in this area of ME. I recognise how super broad and light this is on detail, and some of the obstacles.

    I look forward to reading more of what others suggest. Interesting thread, @JohnTheJack.
    Kitty, ladycatlover, Keebird and 2 others like this.
  10. Milo

    Milo Senior Member (Voting Rights)

    1- biomarker
    2- establishing subsets
    3- large, international, multi-center cohorts studies
    4- replication of the brain inflammation PET studies
    5- auto-antibodies studies, large cohorts
    6- auto-immunity
    7- research surrounding POTS. Comparing POTS patients with and without ME
    8- system biology
    9- metabolomics- comparing metabolomics between different subsets.
  11. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

    I would like to find out why rituximab works for some people (it seems to work well for a small group) so that those it is likely to work for can benefit. I don't want to lose this as a blind alley just because overall, the larger trial didn't benefit most.
    Kitty, andypants, ScottTriGuy and 5 others like this.
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    I want comprehensive neuroimaging studies, to once and for all replicate (or dismiss) the PET findings, plus earlier findings such reduced blood flow of the brain stem.

    Then I want all this compared to other neurological conditions, so we can see what's unique and what isn't.
  13. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    I’m not sure whether this is a complete misunderstanding of the scientific method, but it seems to be ridiculous how often an ME/CFS study comes out that is just ME/CFS patients compared to healthy controls.

    The authors of the study then proclaim that they’ve found significant differences between the ME/CFS patients and healthy controls. Well of course there are. One aet is very ill and likely inactive and the others aren’t. There must be dozens of differences going on, but it feels like none of these actually help understand the illness more.

    So perhaps more studies that compare to illnesses of a similar presentation or severity, of which we have more knowledge, that we can then start to piece together what might be the matter.
    Kitty, Samuel, andypants and 11 others like this.
  14. Trish

    Trish Moderator Staff Member

    I have seen several mentions of the use of the Seahorse instrument / technology which in my limited understanding has shown ME patients blood cells oxygen / energy metabolism is defective. Could this be a biomarker? I'd like there to be bigger studies of this with comparison with healthy controls and with other fatiguing chronic illness.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    I would like to see more replication of Ron Davis' teams blood test where they 'turn healthy cells sick' and vice versa. But this seems to be an OMF only domain and no publications. I know JaimeS says this research is ongoing but am surprised that more people aren't looking into it.

    eta: also Naviauxs work
    Kitty, Samuel, andypants and 14 others like this.
  16. Alvin

    Alvin Senior Member (Voting Rights)

    Indeed, i want to know the identity of that molecule is that is causing the block. But i suspect Dr Davis needs more funding to chase it...
    Kitty, alktipping and adambeyoncelowe like this.
  17. Barry

    Barry Senior Member (Voting Rights)

    Bearing in mind I do not have ME.

    I was in the RAF when I caught Glandular Fever at the age of 18 in the early 1970s. I gather other cases could be a lot worse than mine, but nonetheless I was hospitalised for 2 weeks, given 3 weeks sick leave, and put on light duties for some time after that. Pretty sure I was told to take things easy. So I think there was at least recognition there was a risk of relapse, and that avoiding over exertion was the best way to avoid it.

    Given that Glandular Fever is something a percentage of people are known to relapse with, and given it is often an original trigger for ME, I wonder if there is any commonality between GF relapsing and ME? Could they be two different facets of a common disease mechanism. Would it be something worth investigating?
    Last edited: Jul 8, 2018
    Kitty, Sid, andypants and 5 others like this.
  18. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    I would like any study that leads us to a biomarker and in particular a focus on immune dysfunction and metabolic markers ....but while we are waiting for this:

    I would like studies that properly determine prognosis of getting worse or staying the same based on onset type, symptom pattern and a better measure of disability than the rather crude measurements we have at the moment.

    I would also,like a comprehensive study on prevalence of Comorbid conditions to allow guidelines to be drawn up for symptom based treatments while we wait for an M.E. treatment
    Kitty, Samuel, andypants and 8 others like this.
  19. JohnTheJack

    JohnTheJack Moderator Staff Member

    It's interesting what you say, Barry. My experience has been that URT viruses (of which GF is one of course) have been the worst culprits. There is a long history suggesting some sort of connection between GF and ME. I also think that when I was growing up and was told someone had 'chronic GF', it's possible some at least actually had ME. I was told when I first got ill it was 'likely GF but sometimes it doesn't test positive' (in fact I got GF later and repeated the pattern).
    Kitty, RuthT, andypants and 3 others like this.
  20. strategist

    strategist Senior Member (Voting Rights)

    Autopsy studies. With all tissues accessible, and sufficient money and effort, it should be possible to figure out what is going wrong and where in a sufficiently large number of patients.

    Combined metabolism and CPET studies should enable development of a biomarker for PEM.

    Since we all need treatment right now, I would like to see some studies into uncontroversial treatable comorbidities with the goal of creating treatment guidelines that actually improve the lives of patients. This would be very basic things such as salt loading, supplemental stomach acid, food intollerances and the respective elimination diets, etc. What treatments are helpful right now?
    Kitty, Sean, Samuel and 8 others like this.

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