Discussion in 'Phoenix Rising Articles' started by Mark, Apr 13, 2013.
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This is an awesome article. My only issue is that it's a bit hard to understand for someone with pretty bad brain fog! Maybe someone will be kind enough to do a brief summary on the important points?
Joel, this was a great article! You are a wonderful writer, with a good grasp of the concepts, and enough background to understand the research. Contact me: firstname.lastname@example.org.
Great article! The writing you are doing is an inspiration (just that you are doing it, let alone the great content) and also gives us peeks into fascinating areas of research that we would not normally have access to. Thanks!
Great job, Joel - very encouraging to hear that HIV researchers are getting interested in us. It will be interesting to see how these results tie in with the CFI pathogen study (which is of course also a host response study).
Thanks, Joel. Always good to have new researchers come in from other fields to CFS - and in that photo they certainlylook like a kick-ass team. This study looks on the small size for any robustconclusions, with only 19 patients, so hopefully they will replicate in a larger sample as they plan. And I do like their idea from HIV research of establishing an international cohort of ME/CFS patients.
Congratulations for your article! I am a patient in that study, and I was planning to film a documentary on current lines of research of CFS, I am also supporting a signature petition for requesting the Spanish Government to support a bigger study to validate the biomarkers described by Irsi Caixa Team:
Which by the way I encourage phoenix rising to support from here...
Joel, how can I contact you? Did you filmed something on any of your former interviews?
Thank you for the great feedback everyone. I'm glad people enjoyed the article and found it useful.
Plum - I'll produce a short summary tomorrow. There is rather a lot to take in isn't there and I appreciate that can be difficult when we're foggy!
Sasha - I cannot wait for that CFI study!
Simon - yes the idea of an international cohort is fabulous. One of the major benefits of new researchers is new ideas and experiences brought in from other fields. Invaluable.
Thank you Carlos! A documentary sounds like an excellent idea and the petition too! Can anyone vote, or just those in Spain?
I'll send you a PM.
I guess anybody can vote there, to pump up the volume of the petition ;-)
Just say you are in Madrid, Barcelona, Valencia, Bilbao, etc... do not say you are in the US or out of Spain, so that you count as a spanish citizen requesting for public funding
Fantastic news - all this new research is really getting exciting. I wonder if they could collaborate with Mella and Fluge and /or Dr. Kogelnik at the Open Medicine Institute to analyze blood samples before and after Rituximab treatment.
One question - when they selected study participants that had no co-infections, does this mean that they couldn't have HHV-6, CMV, EBV, etc? I would guess that only a small minority of us don't have any of those......
They excluded people with diabetes, hypertension, chronic obstructive pulmonary disease, inflammatory bowel or Crohn's disease, rheumatoid arthritis, Parkinson or Huntington disorders, schizophrenia, organic mental disorders, substance use disorders, multiple sclerosis. People also needed to have CFS for more than 2 years as well those who were pregnant or who had undergone chemotherapy treatment. The bit about co-infections says "absence of current identified infections." I agree that last statement is a bit non-specific, so I'm not really sure what lengths they might have gone to to check for things like HHV6, EBV, CMV, B19, enteroviruses, etc.
In contrast to other studies their inclusion criteria was focused on patients without intercurrent infections. This is quite a different approach to most ME/CFS studies and I guess that shows the different angle that these HIV researchers are approaching the problem.
Thanks. I appreciate the link to the paper. I can share that w/ my dr.
Interesting read. Good to know we have more researchers on our team !
I want to echo the praise for the way you explain the science, Joel. Although I am a scientist, the ME makes it hard for me to take in and work with new info, and you have made it easier - thank you!
Like others, I note that the subjects were mildly affected, and they were presumably well enough to attend a health clinic. This would exclude a lot of people who would be feeling too ill to do so. I think this is important, as post-exertional malaise is likely to feature significant changes in biochemistry.
Erica Verrillo referred to this problem in her excellent article here:
where she says:
"Natelson’s meta-analysis, entitled “Evidence for the Presence of Immune Dysfunction in Chronic Fatigue Syndrome,” examined 79 studies of immune function in CFIDS patients. Natelson found that that there was no consistent immune dysfunction. Some studies indicated that there were increased pro-inflammatory cytokines, others found increased anti-inflammatory cytokines.
Given the fact that one of the hallmarks of CFIDS is waxing and waning symptoms, this should not have come as a surprise. The immune dysfunction that characterizes CFIDS is that it both under- and over-responds."
I haven't read your whole article yet. I've also had an incomplete look at the Brenu et al paper. Hope to take it all in eventually!
I still have a strong sense that many/most people with ME have an autoimmune condition, quite likely to be related to/resulting from colonic acidity/lactic acid in many/most cases. The evidence for that seems strong.
I'd like to see stronger, less-equivocal biochemical evidence though.
I wonder also if the blood samples would show a difference before and after exercise - basically without PEM and with PEM........
Thank you for bringing this so interestingly and clearly to our attention. You summed it up so well and drew connections with other research to set it in context beautifully. I liked the photo too, nice to see the people involved, people working to help us.
I find it striking that a team very familiar with HIV infection should summarize the impression given by the findings as not that of an autoimmune disorder. The signs of T-cell exhaustion being reminiscent of HIV infection,and their finding of higher T-reg (higher T-cells regulatiory cells is a replication of the Bond U. study, as you mentioned.
Now I'm curious what the immune state of severe, long term cases (like mine) would look like.
Thanks again, much appreciated.
Yes, you're right, there are several factors that influence results, and one of those is undoubtably PEM. I'm looking forward to the PEM research results from Mt. Sinai which is looking at a whole bunch of stuff before and after exercise.
Do you know what other major research results we can expect this year? Anything big expected in the next 6 months? I think there's some early CFI 'pathogen study' stuff expected but apart from that, I don't know what's on the calendar and it's nice to have something to look forward to.
Thanks Joel for your work on this. You did a great job explaining the findings.
Like others here, I have an issue with this part of the research:
"The study was designed in 2010 and so used Fukuda criteria rather than the later 2011 International Criteria that would have allowed selection of defined ME patients. In the paper, the authors show a good understanding and awareness of the potential difference between ME and CFS defined populations and/or subgroups within the disease(s). The majority of the ME/CFS patients in the study were classed as having a mild level of severity, with an approximate 50% reduction in pre-illness activity level, only three of the individuals being moderately severe. No severe cases were represented in the study."
WHY couldn't they make an effort to use the Canadian Consensus Criteria, or maybe even scrapped what they had and done the study over using the MEICC? And more importantly why didn't they gather blood samples from those who are severely stricken? The most important part of a study is the cohort. It bugs me that they weren't more discriminating about this.
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