RituxME

[Tombo]

I happen to be married to one of the subjects included in the Fluge/Mella study which is now initiated (Phase 3). I believe their work will be groundbreaking both in terms of possible treatment options and the understanding of mechanisms underlaying the condition. I think it is only a matter of time before ME is properly understood and also treatable. We actually live in the very city, the city of Bergen, where these doctors began their work. What would be the odds...
They explore further the possibility of endotel dysfunction as a diagnostic tool, they explore gastric malfunctions, register activity levels (subjects are wearing a device that saves all information related to activity level during a week), they explore family genetics etc. And, from what I gather, Rituximab is not the only medication being considered, thus possibly enabeling a wider range of treatmant options in the future for those that do not benefit from having Rituximab infusions: It may just be a matter of finding the right medication, which is not uncommon for other autoimmune diseases.

 

[deleder2k]

Congratulations to you and your wife!

If you havent noticed, there are a lot of interesting reading here: http://forums.phoenixrising.me/index.php?forums/rituximab-news-and-research.71/

Good luck!

 

[Tombo]

Thank you! It is a great privilige being included in the trial, as there are som many people that are severly ill. We are also aware of the risk of being disappointed, either because of receiving placebo or failure to respond to the medication. However, despite how my husband responds, the trial is immensely important. It is a bit like being part of (medical) history as it is unfolding.
I thank you for helping me navigate Some time have passed since the last time I used this forum, and all the information is a bit overwhemling at first. I might post some "tidbits" occationally as the trial procedes. My spouse's first infusion is only a couple of days away now...

 

[lansbergen]

They explore further the possibility of endotel dysfunction as a diagnostic tool,

I can not find what endotel is. Do you mean endothelium?

 

[NK17]

Welcome back to the forum @Tombo, I wish you and your husband the best outcome by taking part in the clinical trial.
You couldn't say it better:"it is a bit like being part of (medical) history as it is unfolding".
Do keep us posted and good luck again .

 

[helen1]

Very interesting and exciting @Tombo. Thanks so much for letting us know and please keep us posted! Good luck to you both.

 

[Gingergrrl]

@Tombo best wishes to you and your husband and please keep us posted!

 

[Tombo]

I can not find what endotel is. Do you mean endothelium?

I can not find what endotel is. Do you mean endothelium?

Yes, it should of course have been endothelium dysfunction

 

[sillysocks84]

@Tombo how is the trial going. If you can't disclose that info, don't. I am excited that research is being focused on me. It looks like they are interested in being thorough too. Good luck! Are they finding this treatment helpful in pots and dysautonomia issues?

 

[Tombo]

Hi! The trial is progressing nicely, with only one center lagging slightly behind (it is a multi-center study). It is certainly exciting days for the ME community, considering new research carried out in several corners of the globe The first subjects in the trial will have their last injection in December, I believe, but they will still have to fill out reports for one more year. Fluge/Mella has another trial going as well, as you probably know:
http://www.shoutoutaboutme.com/about-mecfs/cyclophosphamide-trial-for-me-gets-underway/

 

[mango]

article in norwegian, published 3 december 2015.

it's about the RituxME trial, from one of the hospitals that are taking part in it.

På Notodden har man ansvar for 32 pasienter. Den første dosen av medisinen ble gitt før jul i fjor og planen er at de skal få den samme medisinen seks ganger i løpet av 12 måneder.

Halvparten får intravenøst tilført aktiv medisin, mens de resterende får virkningsløs placebomedisin [...]

– Nå har alle fått medisinen fire ganger og innen utgangen av mai skal alle ha fått medisinen seks ganger, konstaterer prosjektsekretær Ann Elin Lonar.

Sykepleieren gjør mye av det praktiske arbeidet i studien. Først i september 2017 kan forskerne begynne å analysere dataene og se hvordan det har gått med pasientene som har fått ekte medisin.

Men tidligst i 2018, kan forskningsresultatene gi svar på om kreftmedisinen virker mot ME/CFS, og om det eventuelt er undergrupper av ME/CFS med ulik effekt.[...]

Thürmer har ingen tro på at sykdommen kan avskrives med psykiske problemer.

– Jeg tror dette er en somatisk sykdom, men vi har ikke tester eller effektiv behandling foreløpig. Derfor tror jeg vi trenger mer forskning og mer kunnskap for å kunne hjelpe disse pasientene. Nettopp det gjør et slikt forskningsprosjekt svært meningsfylt å være med på, sier Hanne Thürmer.

http://www.nrk.no/telemark/forsker-pa-ny-me-medisin-1.12686017

 

[Kati]

article in norwegian, published 3 december 2015.

it's about the RituxME trial, from one of the hospitals that are taking part in it.



http://www.nrk.no/telemark/forsker-pa-ny-me-medisin-1.12686017

What does it say?

 

[A.B.]

Notodden researching new ME-medicine
Notodden hospital is the only local hospital in a research project to determine if a new drug works positively for Norwegian ME patients.

Hanne Thürmer and her colleagues at Notodden follow up 32 of the 152 ME patients in the study, writes Telemark Hospital on their websites.
- My hope is that we will eventually find their way to a good treatment for ME. This is without doubt a serious physical illness, says Thürmer.

Superior estimates that Telemark each year somewhere between 170 to 240 new ME patients.

Notodden project on schedule

Overlege Hanne Thürmer.

Photo: Ragnar Lurås / NRK
Notodden has responsibility for 32 patients. The first dose of medication was given before Christmas last year and the plan is that they will get the same medicine six times over 12 months.

Half receive intravenously administered active medicine, while the remaining are ineffective placebo medicine. In order to exclude the so-called placebo effect, knows neither healthcare professionals or patients who have active medical and who gets fed "cheating medicine".

- Now have all received medication four times and the end of May should all have received medication six times, says project secretary Ann Elin Lonar.

The nurse makes a lot of practical work in the study. First, in September 2017, researchers can begin to analyze the data and see how it has gone with patients who have had real medicine.

But earlier in 2018, the research results may provide answers about cancer drug works against ME / CFS, and whether any subset of ME / CFS with different wattages.

Have archive of 250-ME patients
Thürmer and her colleagues built a few years back up a study offerings and a learning and activity offerings by Notodden hospital. It meant that they finally sat with a list of 250-ME patients who were positive to join in a future study.

It led to the offer to join the big Norwegian ME study which is now being followed with interest also at US hospitals.

Thürmer does not believe that the disease can be amortized with psychological problems.

- I think this is a physical illness, but we do not have tests or effective treatment currently. Therefore, I think we need more research and more knowledge to help these patients. Precisely what makes such research extremely meaningful to attend, says Hanne Thürmer.