BBC: Research in Norwich could offer ME/CFS breakthrough

[perrier]

How is the work of Dr Naviaux and Dr Davis dovetailing with the Norwegians and now the British?
And why do some folks get worse on RTX? And is there now a way to know who will fare better and who worse?

Thanks

 

[sb4]

I do not question your good intentions, however, it is also important to be sensitive about the context in which you offer advice. It did not feel appropriate to me for someone, simply on the basis of a photograph of a sick person, to say forcefully that she should do any particular thing, however helpful you may think it is.

Giving advice to, or about, an individual you do not know, who you know very little about, and who has not asked for that advice is not helpful, kind or appropriate, however well meaning.

If you have useful information about electrical fields, or any other aspect of treatment, I think a more acceptable and helpful way of sharing it would be to start a thread in which you share any knowledge, experience and evidence you have on this particular aspect. If you do that, I suspect it will be much better received as a helpful input. Those who are interested can then join in the discussion and share experiences.

I see your point, I guess we are all different. I am so desperate to get better I don't care who or where I am given advice however it was not the subject of the thread.

Sounds silly to me.There was never any good evidence for that grounding stuff, and I thought it had gone away?

No, I'd say it's getting stronger, not going away. Grounding is an unlimited source of electrons. Here is a ted talk that's pretty good on the subject.

radio waves surround us entirely, I doubt you could escape them even if you tried without some sort of underground nuclear bunker, natural light aka UV cannot pass through glass windows, even if you open the curtains or go closer to the window.

Native waves are fine, man made ones aren't. Yes it's now impossible to escape all of them but having multiple sources of nnemf near you constantly is dramatically increasing the problem.
UVa can pass through windows, so can visible and IR. Natural light contains the correct amount of light at the correct time. This is very important for carcadian rhythm and hormones. Artificial light has way too much blue which slows atp production.
https://www.drbaileyskincare.com/info/blog/do-uv-sun-rays-go-through-windows

 

[Cheesus]

How is the work of Dr Naviaux and Dr Davis dovetailing with the Norwegians and now the British?
And why do some folks get worse on RTX? And is there now a way to know who will fare better and who worse?

Thanks

Article from @JaimeS outlines possible connection:

http://www.meaction.net/2016/08/30/naviauxs-metabolism-paper-is-about-as-big-as-you-think/

 

[sarah darwins]

Well done! I just emailed Woman's Hour and asked them to cover it.

Very cool idea. People here have tried writing to programmes like that before but it's much better when we can point them to a short piece by one of their own as a starting point. Makes it easier for them to get what the story is and have some trust in it. Well done.

 

[deleder2k]

@sb4, it would be great if we could keep this thread about the research in Norwich/Rituximab, and not about electromagnetic hypersensitivity, grounding and whatnot.. I am sure someone is in interested in debating that if you create your own thread!

 

[FTY]

Very cool idea. People here have tried writing to programmes like that before but it's much better when we can point them to a short piece by one of their own as a starting point. Makes it easier for them to get what the story is and have some trust in it. Well done.

Thank you! Being an expert in Radio 4 as listening to the radio is one of the few things I can do these days, I reckon Woman's Hour is a good bet. I wrote an email mentioning Jen Brea's talk as well, not sure if that was a good idea or not. In retrospect maybe would have been better to mention purely the BBC East story about the Norwich research. If anyone else wants to send them a quick message with the link to the BBC East Norwich story in it that might be helpful. You can just:

1) Go to womans' hour website contact form: https://ssl.bbc.co.uk/programmes/b007qlvb/contact

2) Write a short comment asking them to cover research into ME being conducted at University of Norwich with a link to this clip: http://www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017

 

[Barry53]

look forward to the american broadcasts on it; just remembering "East An-gee-la"..................for all non UK people ..it is Norwich as in porridge.

Sounds like slightly slushy porritch to me .

 

[Jenny TipsforME]

@FTY well being Women's Hour I expect they'd be interested in the gender bias angle from @JenB 's TEDtalk

Do we have people who are confident and well informed to go on TV/radio in the UK? Definitely not my sort of thing. If TV/radio turn around and say "yes we want to cover this tomorrow" they'll probably want pwme (who don't have an official role, just pwme) to interview. I expect they'd make a concession to do a phone interview or a home visit.

 

[LisaGoddard]

Dear veganmua,

Please do not try to track down doctors involved in this research. If large numbers of patients clamour to be included in the trial from elsewhere that is the surest way to make the trial not happen. This has already been a major reason why things have been slow. The few doctors treating ME are hugely overstretched and if they get masses of people trying to get on their lists so that they can be in a trial they may well simply walk away from it. I would strongly recommend that the doctors involved do not make themselves known publicly for this reason.

I live in Suffolk - one of the areas covered by the UK trial. I'll talk to my GP about possibly being included in it but it may that they have already identified the patients that they need. What do you think?
Not to be housebound would be something amazing.

 

[Kati]

I live in Suffolk - one of the areas covered by the UK trial. I'll talk to my GP about possibly being included in it but it may that they have already identified the patients that they need. What do you think?
Not to be housebound would be something amazing.

Lisa, it won't hurt telling your GP that you are interested in biomedical trials, so if he hears about recruitment from the investigators, he'll think about you.

i think this trial in the UK will do marvellous things in waking the physicians on the biological processes that happen in ME and it will discredit the psych lobby further.

That suggestion is also good for all of us around the world. Keep an eye on opportunities to participate in biomedical research. There are several hot centers: Boston, Miami, NYC, Birmingham, Alabama, San Francisco, Salt Lake City, Incline Village, Germany, Norwich, Griffith University, Australia and dare I say Vancouver?

Edit to add: also it wouldn't hurt to join the local advocacy groups so as soon as they learn about recruitment for studies, they pass it on to their members- ex: ME Association, Invest in ME, Solve ME/CFS

 

[FTY]

@FTY well being Women's Hour I expect they'd be interested in the gender bias angle from @JenB 's TEDtalk

Do we have people who are confident and well informed to go on TV/radio in the UK? Definitely not my sort of thing. If TV/radio turn around and say "yes we want to cover this tomorrow" they'll probably want pwme (who don't have an official role, just pwme) to interview. I expect they'd make a concession to do a phone interview or a home visit.

Hmmm, I don't know. Maybe Invest in ME could provide someone to talk about their work, and Action for ME/ ME Assctn have pwme who would be willing to talk?

I would find it very difficult to do myself at short notice.

 

[rebar]

Hi deleder2k what is the current protocol for dosing. The initial dose is a series isn't it, and the following are how often? With travel from NYC it really has to be closely planned.

 

[Dechi]

They use the same drug as the Norwegians. Rituximab. The trade name in Northern America is Rituxan, while it is Mabthera in the rest of the world: http://www.rexall.ca/articles/view/1213/Rituxan

Kolibri is the name of the clinic. Their number is +47 52 69 69 69. You can also send them an e-mail at post@kolibrimedical.no. I think they have treated upwards of 200 patients. I am sure they are happy to treat any Canadian.

They are available by phone Monday - Friday from 11 pm PST, (2 am EST) to 7 am PST (11 am EST).

@deleder2k Thank you so much ! When you say 200 patients, do you know if they are all ME patients ? Is their protocol specifically for ME ?

 

[deleder2k]

Yes, they use the same protocol as the ongoing phase 3 study in Norway. It is literally the same.

You can read more about the study here: https://clinicaltrials.gov/ct2/show/NCT02229942

 

[FTY]

Yes, they use the same protocol as the ongoing phase 3 study in Norway. It is literally the same.

You can read more about the study here: https://clinicaltrials.gov/ct2/show/NCT02229942

I've thought about it and, personally, I am going to heed the advice of Fluge and Mella and not take rituximab outside of trials. It may be that more is known in relatively little time which will be worth waiting for. I am desperate but I've waited so long already, what's another couple of years?

 

[veganmua]

I've thought about it and, personally, I am going to heed the advice of Fluge and Mella and not take rituximab outside of trials. It may be that more is known in relatively little time which will be worth waiting for. I am desperate but I've waited so long already, what's another couple of years?

I will at least wait until the phase 3 trial results are out. But waiting is the hardest part!

 

[cirrus]

Later BBC interview - with Professor Simon Carding of UEA/IFR - regarding the UK Centre of Excellence

 

[John Mac]

Professor Carding:
"We believe that the trigger that is responsible for producing these bad antibodies originates in the gut"

And yet still the NIH fails the Lipkin test by refusing to give him the money he needs to test the gut samples he has already collected"

 

[BurnA]

The last thing scientists like to offer is false hope

 

[Jo Best]

I've been following the progress of the Invest in ME Research Centre of Excellence projects since the charity published the proposal and announced it at their international London conference in May 2010. This is just a summary for anyone who wasn't around at the time or able to follow over the years (otherwise please skip post).

Norwich Research Park is the hub at the centre, but the project radiates out nationally and internationally, and so far includes UCL, where the B-cell studies prerequisite to the UK trial, led by Jo Cambridge, have been underway since 2014; and Oxford with Invest in ME Research Advisory Board member Angela Vincent.

Collaboration in Europe includes Norway (the Phase II trial was presented at the 2011 Invest in ME Conference prior to publication), Germany, Spain, Sweden (Jonathan Edwards will know if there are more), facilitated by the formation of the European ME Research Group, a project of the European ME Alliance.

International collaboration includes the various researchers involved in the international Invest in ME Conference and Biomedical Research into ME Colloquium, but a fine example is the three months spent by medical student Navena Navaneetharaja (now a qualified medical doctor) from the Norwich team with Maureen Hanson at her Cornell lab.

The Invest in ME Research Centre of Excellence for ME translational biomedical research strategy began with the gut. This was planned from the outset in 2010 and the work began in October 2013 with a 3-year foundation study investigating the role of leaky gut in ME (ME/CFS for research purposes) leading into the next phases of that research. Norfolk PCT (Primary Care Trust) had agreed to fund a clinical specialist for examinations.

The NHS reforms following the 2010 general election set that back as the PCTs were disbanded and the negotiations had to begin again within the new structures and personnel. The research was enabled to get underway by using samples from patients under the care of Amolak Bansal, clinical lead of the Surrey CFS Service. This has since included patients with severe ME by means of samples taken at home visits.

Also in June 2013, following their annual international London conference events, Invest in ME Research announced the plan for a UK trial in collaboration with UCL, with Jonathan Edwards advising on the trial, which he recommended begin with a preliminary study of B-cells in ME patients. This began in 2014 and included patients of Amolak Bansal (Surrey) and Saul Berkovitz (London). This work has also been of value to the Phase III Norwegian trial. The paper on the initial study has been published and the work is currently ongoing.

Please anyone shout if you'd like links etc.