Discussion in 'Phoenix Rising Articles' started by Mark, Apr 3, 2013.
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Thank you Joel for this great interview with Dr. Enlander.
It is a great question that Dr. Enlander posed: Why weren't all the clinicians who were currently running the Ampligen trials invited to the FDA meeting? I had noticed their absence but, thought that maybe they were invited but, for some reason could not attend. I think that as patients we should ask the FDA why? It just doesn't make sense to me.
As a patient of Dr. Enlander, I am very grateful to him for what he does for his patients and for the ME/CFS community.
I have taken part of the Mt. Sinai study and am eagerly awaiting the results of the findings.
thanks, Joel, for this great interview.
And I'm encouraged by what Dr. Enlander said. Training new docs is fabulous, and lots of the other stuff is amazing, too.
Great article, snowathlete
Thanks, Joel - great article, and I particularly liked that you asked him what patients should be doing in terms of activism and supporting researchers. I'd like to see that question asked of every ME specialist, and perhaps an additional question: what do they think that our ME clinicians and researchers can or should do in terms of activism and advocacy, since patients' voices have been so marginalised.
Interesting stuff, thanks again!
Thanks Nielk. I agree, we need to ask these questions of the FDA! Nice to know you are involved in one of the studies at Mt. Sinai. Which one are you involved in?
Thanks Willow! I was really pleased when I heard that too. How else will the next generation of researchers get involved in ME/CFS? I hope other organizations follow suit!
Valentijn - thanks! Im glad you liked it!
Thanks Sasha, glad you liked it too - I couldnt have done it without Dr Enlander
I dont know what Dr Enlander would say about that. I know he talked recently to a group in the UK for instance which I think was on the request of Lady Mar, and of course a number of our doctors do their bit with the way they talk about ME/CFS to the press, and at conferences etc - but how much do we want our doctors spending time on that, rather than doing the research and clinical work? I agree though that their voice is louder than ours, as patients. It is an interesting question.
I agree, not much - I'd rather have them doing the research and clinical work for the vast majority of the time but I'd like to see them doing some advocacy - for example, letter-writing to the medical journals when something like PACE comes out, writing when another awful psych piece comes out, that kind of thing. I'd like them to talk about the biomedical research, how they're using antivirals, immune therapies and so on, how mediaeval the treatment of ME is in the UK, and so on. Doctors listen to other doctors and not to patients, I'm afraid.
I'm pleased that they're on committees representing us - but I think there's more that more of them could do. They also stand to benefit - the more credible ME is as an illness that responds to immune therapy, the more funding there will be for their research and the better they will be able to help us (which is what they also want).
Perhaps there's some professional risk for them - I don't know. And it's not a criticism - they already do so much for us - but it's something I'd like to see more of in future. I think that both we and they could benefit.
Top article, Joel, thanks.
Great news that Ila Singh will be involved in CFS/ME once again, she seems to be the real deal.
AMPLIGEN, looks like he has sympathy with the FDA (as do I)
So we need bigger studies but they being impeded by the huge cost of ampligen. I wonder if its really that expensive to produce, and couldn't Hemispherex supply at cost given the potential payback for them?
PEM Good to see yet another group focusing on this defining characteristic of the illness
That's one generous patient - and the kind of size of study that's needed to deliver robust findings (and I get the impression that studies this size are slowly becoming more common). Presumably the faecal samples would provide evidence, or not, of gut enteroviruses infections.
Good points Sasha. I agree that writing to journals in that way would be really useful, and not something the average patient will have sucess with. I'd like to see a large group of our doctors/researcher get togehter and tackle stuff like in a strategic way as a group. I think it would reduce that profesional risk that you talk about and the collective weight of a group like that would have more impact perhaps. I wonder if anything like that is in the works somewhere?
Thanks Simon. I agree, Dr Enlander has a great team I think, and I was also very pleased to see more work on PEM. I think we need to change the perception that the illness is defined by 'fatigue', when for me, it is only the third thing that i would mention, after PEM and Immune dysfunction. We need to do that, and also find out why its such a problem for us; there's gold in them hills!!
In Australia I feel that much of the emphasis is on the immune system. This is strongly affected by the diet, namely food intolerances. Also there is awareness of the high 1,25 vitamin D levels in many people. The treatment of infections, either viral or bacterial, is considered very important, but it is not considered necessarily as the whole picture.
As part of the treatment detoxification is very significant.
Alos there is some awareness of the importance of infections by Ticks and related vectors.
Some of us have been writing letters to respond to new studies coming out. I think some patient letters got published in response to PACE, and there should be some patient letters published in response to the PACE recovery paper that came out a few moths ago. But it is a bit tricky, because the journals don't want personal/opinion-based patient letters ... they want hard scientific responses where pretty much every statement is supported by citing to other credible sources. And that is a lot of work for patients, without a lot of help.
I am very excited about the project at Sinai. The team is great and I am a big fan of the systems-approach they are taking to the problem.
Very glad to see this interview, very well-done; it was long-awaited, and did not disappoint. I participated in the exercise study as well. Needless to say, it was very difficult, but very important. As we know, this disease is and has been under-researched, so Dr. Enlander has placed a special emphasis on getting across to the team what the disease is, how extreme it can be, and how severely it can affect us.
I've been taking MAF878 yogurt for more than a year now, and it's definitely been helpful--substantially. I stopped using it in order to participate in the study, and had to reschedule due to Hurricane Sandy, which resulted in my having to have stopped it much longer than I'd expected. Definitely felt a dropoff following discontinuing with it, and absolutely feeling the improvement now that I've been back on it awhile. When I first started with it the first thing I noticed was that my sleep improved--after dealing with broken sleep patterns for years, all of a sudden I was getting six, seven, eight solid hours a night. That's huge, and for me, this was followed by increases in strength and stamina. I know there's probably very little that will help all patients, and I've certainly tried my share of things that didn't seem to help at all. This is the best treatment, without question, I've had in all the time I've been sick.
I was at the conference at Mt. Sinai from which video clips were published on the Patient Advocate blog last year; it was gratifying to have a look at how this team is looking at researching this disease. And I'm glad to say I have great confidence in them.
This excerpt was posted in an article today on CFS Patient Advocate:
Thanks Jay. I've noticed that a lot of people who have taken MAF878 have reported improved sleep - I think that's really interesting. Good to hear from someone who took part in the study too. Thanks for partisipating in the study, a tough one for the patient with the exercise requirement, but it could really give us a lot of answers and clues for further research, so I agree, it's really important.
@Sasha- I agree. Dr. Enlander is one of the few ME clinicians or researchers who has spoken out about the malfeasance and/or nonfeasance of the US and UK govts and also of CFIDS Assn of America.
It does seem that the same coopted and semi-coopted researchers get all the grants and opportunities to speak from NIH, CDC, FDA, CAA and Phoenix Rising when under Cort's rule.
I don't think there's much of a coincidence between (a) the fact that this is the first interview that PR has ever done with Dr. Enlander, (b) the fact that Cort just left PR and (c) that Dr. Enlander is one of the few doctors to criticize all the above mentioned powers that be.
I think it is a benefit to all ME patients that Cort has moved on and consequently important experts are not excluded from the PR conversation.
Short video from Dr Enlander, posted on YouTube where he gives details of his long-distance consultations via Skype or telephone:
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