Collaboration with SolveCFS

The past few days, so many things have happened that i've been waiting for years.

I am very happy to say that i will be collaborating with SolveCFS and the CureME team of the LSHTM giving feedback to a number of processes.

I am not sure as to what i can disclose at the moment regarding my involvement but a change took place in the sense that some key people in ME/CFS are now listening and SolveCFS . I had the first call last Tuesday with Allison from SolveCFS.

1) I would like to Thank Professor Modra Murovska for "thinking outside of the box" and for inviting me at EUROMENE in London.

2) I would also like to Thank Kathleen Mudie and the CureME team for considering the technologies that i've been using. A paper -maybe two- are on the way and we also have a software that can enrich thousands of patient data to extract insights. This work will be presented in APHA this coming November in Philadelphia.

4 years ago i had no life and i came close to taking my life away. I did not have the strength to do it and the only thing that gave a meaning to continue living was to try and find what was going on.

I am willing to give every single finding and software i have to SolveCFS and to whoever is listening. This will speed up identifying the sub-groups of PwME and i look forward in applying these techniques to accelerate this task.

I will be updating this thread for this reason.


I strongly believe that we are getting close. I do not want to give false hope but i do want to give real hope.

We are getting there.

 

Thank you so much for sharing this and for being involved in research. That’s awesome news!

 

This is good news @mariovitali thanks for your persistence. I hope this collaboration bears fruit.
(Glad you’re still with us )

 

I am in shock, Just now i got an email for a collaboration proposal from Karolinska Institutet. I do not know the kind of collaboration but they are interested in my work.

This is so unreal.

 

@mariovitali Great news

 

Like Mark Watney said in The Martian: [we're] going to have to science the shit out of this. It's the only way out of this mess, except we have no ground control or secret Chinese program sending a rocket to get us out. It's all dust and potatoes and a lethal environment. Collaborating on the science is how we deal with this. Glad to hear it.

 

No idea what all of this exciting news doing to your HRV @mariovitali but it must have raised your HR well into super-excitement territory .

Very happy for you that all your hard work is being recognised. And even more happy that you decided back during your dark days four years ago to not give up but to hang in there and start doing all that hard work. Good decision and great effort

 

Here is the tweet from Professor Petter Brodin @Karolinska :







We will see how we can incorporate results of the software i use with their results on their paper.


@Ravn

Thank you for your input with HRV, i can contact Dr Morten to discuss further.


My ME/CFS quest is by no means over. I do not have any of the symptoms but for some reason lately i get bloated in the middle of the night and have IBS. I never had that so there is something lurking that i will have to find out.

 

Well done @mariovitali. Great news. Thank you for your work.

Just to say in case it’s pertinent to what you are doing that I too have begun to develop gastrointestinal symptoms after always having a good digestion. It was the one symptom I didn’t have- another area to read up on.

 

Maybe it's a random anecdote, but whatever maybe not.

About 4 years into a relapsing-remitting course, I had had digestive issues for a few years. Nothing serious, mostly discomfort. I was in remission from ME at the time, though had experienced mostly CNS and cognitive issues with little fatigue and not quite PEM, not close to be OK but functional. I decided to make a few attempts at elimination diet, went vegan for about a month.

It did not do much. So I went back to a regular diet and decided on a hearty meal to break that: poutine. If you don't know poutine, it's to food what ambrosia would be to drinks: French fries and cheese curds topped with gravy. With bacon for extra yummy. Where I'm going with this: it was about as fat as it gets.

Thus began my real digestive problems. It hurt so bad I could barely eat for several days. It felt as if my abdomen was on fire. It began to hurt barely a few minutes into eating it, couldn't even finish it. Ever since then I've had this problem where eating quickly turns into a hate fest of pain in my abdomen, mostly concentrated on the surface so I think it's the peripheral nerves acting unhappy.

Very irregular, impossible to settle on an exact cause. I attempted a few times to eat the same meal that brought me pain and it invalidated that it was about specific foods, eating it again would sometimes be fine. Now it's only sporadic but I experienced this probably about 100 times.

Fat. Liver. Don't know if there can be a link but the change was immediate and brutal.

 

Wow!

 

Some examples of current ME/CFS research at Karolinska Institutet:

The MED Study
https://www.s4me.info/threads/the-med-study-bo-christer-bertilson-sweden.8443/

Clinical, radiological and immunological findings in ME/CFS, other pain conditions or fatigue
https://www.s4me.info/threads/clini...er-pain-conditions-or-fatigue-bertilson.9654/

https://staff.ki.se/people/gabber

Kinetic Oscillatory Stimulation (KOS) in Nasal Cavity
https://www.s4me.info/threads/new-m...-encephalomyelitis-chronic-fatigue-synd.3681/

ACT for ME/CFS - an Open Case Trial
https://www.s4me.info/threads/sweden-act-for-me-cfs-an-open-case-trial.4684/

The prevalence and impact of psychoneuroimmunological factors in ME/CFS
https://www.s4me.info/threads/the-p...and-mechanisms-of-act-2019-olsson-et-al.8461/