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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
Sounds silly to me.There was never any good evidence for that grounding stuff, and I thought it had gone away?
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.
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
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.
Sounds like slightly slushy porritch to me .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.
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.
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 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.
@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.
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).
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 will at least wait until the phase 3 trial results are out. But waiting is the hardest part!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?
BBC said:The last thing scientists like to offer is false hope