Full link to Invest In ME statement on "MEGA study - #ProjectSinkhole"
http://www.investinme.org/IIME-Newslet-1609-02.htm
http://www.investinme.org/IIME-Newslet-1609-02.htm
-
Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016
- Thread starter AndyPR
- Start date
The top four most liked tweets for #CMRC2016.
I think speaks volumes of what the majority consensus is of this. They need to engage with the wider patient community but will they?
I think speaks volumes of what the majority consensus is of this. They need to engage with the wider patient community but will they?
worldbackwards
Senior Member
- Messages
- 2,051
I'm reminded of the kids in the Panorama programme; the girl who ended up on a locked ward after she developed ME after having leukemia, or the boy who became so sick after GET that he lived severely ill in isolation and had a panic attack whenever a doctor came near him. That was 15 years ago.
I'm appalled that we're being asked to support these people. Surely this is the ultimate grinding of our faces into the dirt.
- Messages
- 13
Hi Friends,
Greetings from the UK...I participated in the CMRC meeting this week. Thank you all for mentioning and posting on that meeting. In all my talks, including the recent one in Newcastle, I include a section I call "the No spin Zone." I have uploaded those slides from Wednesday (uploaded as a pdf file). I thought I will share...
Organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere.
I write regularly about our position on key issues and the landscape in our Research 1st Editorial. This is the latest one (I think AndyPR posted it, thank you Andy!): http://solvecfs.org/september-zaher-letter/
Love from Newcastle!
Z
Greetings from the UK...I participated in the CMRC meeting this week. Thank you all for mentioning and posting on that meeting. In all my talks, including the recent one in Newcastle, I include a section I call "the No spin Zone." I have uploaded those slides from Wednesday (uploaded as a pdf file). I thought I will share...
Organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere.
I write regularly about our position on key issues and the landscape in our Research 1st Editorial. This is the latest one (I think AndyPR posted it, thank you Andy!): http://solvecfs.org/september-zaher-letter/
Love from Newcastle!
Z
Delighted to see your slide #5, @znahle! I don't know if you can say anything about how it went down - I would like to have seen the discussion, if any.
As you can see from the forum, there's a lot of distress that Peter White (PACE) and Esther Crawley (MAGENTA) are involved in MEGA and that patients are being asked to support it despite that.
As you can see from the forum, there's a lot of distress that Peter White (PACE) and Esther Crawley (MAGENTA) are involved in MEGA and that patients are being asked to support it despite that.
- Messages
- 72
- Location
- UK
Wow that was an amazing attempt to get our reality out there. Many, many thanks to Dr Nahle for doing this. Again it stokes my hope boiler and gets me singing( well maybe not just yet...) again.
AndyPR
Senior Member
- Messages
- 2,516
You are welcome.
Did you spot the transcript I did of the Dr Unger webinar?Thank you for sharing these slides, are we free to share elsewhere?
Glycon
World's Most Dangerous Hand Puppet
- Messages
- 299
- Location
- ON, Canada
Did you ask that your talk not be streamed, @znahle ? If so, why? If not, do you know why it wasn't?
BurnA
Senior Member
- Messages
- 2,087
Thanks so much !
Simon
Senior Member
- Messages
- 3,789
- Location
- Monmouth, UK
Updates on some of the MRC-funded mecfs projects
Given the awards were made in 2011, progress has been slow, but there were some interesting findings in the latest set of updates (I only saw 3 updates and my notes may not be entirely accurate - apparently videos from the conference will go up this week).
1. Persistent fatigue after interferon-alpha treatment (echoes of Dubbo study findings)
This study has been controversial from the off, partly because it''s from King's Institute of Psychiatry and partly because it doesn't actually study mecfs. But bear with me - I think these findings are interesting.
The idea is to use intereferon-alpha treatment of hepatitis C virus (HCV) patients and the persistent fatigue (and other mecfs-like symptoms) that develop in a subgroup after treatment as a 'proxy' model for what might be going wrong in CFS. Specifically, the idea is to look at a hit and run type model where an initial immune insult (in this case the pro-inflammatory cytokine interferon-alpha) results in long-term illness. The study also looked at mecfs patients.
To recap, the Dubbo studies found that for three different infections associated with CFS (glandular fever, Ross River virus and Q-fever [coxiella burnettii] the best predictor of who would go on to develop CFS was not psychological factors but the severity of the initial illness and the intensity of each patient's initial cytokine response.
One advantage of using the interferon-alpha treatment model is there is no possibility of chronicity ie the immune insult of interferon stops when treatment stops and can't persist (which is always a possibility with an initial infection).
Results
The interim results presented by Alice Russell were for 37 patients without persistent fatigue and 18 with (PF), a subset of the total of 90 patients. The small samples made it harder for findings to reach statistical significance but that may be different when looking at the full sample (data collection had only recently completed).
At p=0.057, it wasn't quite significant, but the PF group were more likely to have had treatment for longer. There was no difference in treatment effectiveness (in particular the PF were less likely to have problems from remaining HCV so that wouldn't explain the fatigue).
Given the awards were made in 2011, progress has been slow, but there were some interesting findings in the latest set of updates (I only saw 3 updates and my notes may not be entirely accurate - apparently videos from the conference will go up this week).
1. Persistent fatigue after interferon-alpha treatment (echoes of Dubbo study findings)
This study has been controversial from the off, partly because it''s from King's Institute of Psychiatry and partly because it doesn't actually study mecfs. But bear with me - I think these findings are interesting.
The idea is to use intereferon-alpha treatment of hepatitis C virus (HCV) patients and the persistent fatigue (and other mecfs-like symptoms) that develop in a subgroup after treatment as a 'proxy' model for what might be going wrong in CFS. Specifically, the idea is to look at a hit and run type model where an initial immune insult (in this case the pro-inflammatory cytokine interferon-alpha) results in long-term illness. The study also looked at mecfs patients.
To recap, the Dubbo studies found that for three different infections associated with CFS (glandular fever, Ross River virus and Q-fever [coxiella burnettii] the best predictor of who would go on to develop CFS was not psychological factors but the severity of the initial illness and the intensity of each patient's initial cytokine response.
One advantage of using the interferon-alpha treatment model is there is no possibility of chronicity ie the immune insult of interferon stops when treatment stops and can't persist (which is always a possibility with an initial infection).
Results
The interim results presented by Alice Russell were for 37 patients without persistent fatigue and 18 with (PF), a subset of the total of 90 patients. The small samples made it harder for findings to reach statistical significance but that may be different when looking at the full sample (data collection had only recently completed).
At p=0.057, it wasn't quite significant, but the PF group were more likely to have had treatment for longer. There was no difference in treatment effectiveness (in particular the PF were less likely to have problems from remaining HCV so that wouldn't explain the fatigue).
- The PF group had higher fatigue throughout treatment, as well as 6 months after treatment
- The PF group had a statistically significant exaggerated cytokine response iniitally during treatment, but this difference didn't persist (much like with Dubbo). This was true for cytokines IL-10, IL-6 and IL-17a
- Messages
- 72
- Location
- UK
Updates on some of the MRC-funded mecfs projects
Given the awards were made in 2011, progress has been slow, but there were some interesting findings in the latest set of updates (I only saw 3 updates and my notes may not be entirely accurate - apparently videos from the conference will go up this week).
.............."
Brilliant. Excellent. Yes I found this update very interesting.
Many thanks for posting this and I look forward to hearing whatever else you can share from this conference.
Was there any indication that the ME/CFS BioBank samples at the Royal Free are being used at all?
For example, was anyone interested in doing a study to repeat the Naviraux Metabolomic's study?
Many thanks again for putting all this effort it in to all of this. What a star!
Given the awards were made in 2011, progress has been slow, but there were some interesting findings in the latest set of updates (I only saw 3 updates and my notes may not be entirely accurate - apparently videos from the conference will go up this week).
.............."
Brilliant. Excellent. Yes I found this update very interesting.
Many thanks for posting this and I look forward to hearing whatever else you can share from this conference.
Was there any indication that the ME/CFS BioBank samples at the Royal Free are being used at all?
For example, was anyone interested in doing a study to repeat the Naviraux Metabolomic's study?
Many thanks again for putting all this effort it in to all of this. What a star!
Simon
Senior Member
- Messages
- 3,789
- Location
- Monmouth, UK
Thanks so much for those kind words, Janice.
) as well as 50+ MS patients - these could be useful sick controls, controlling to some extent for inactivity. But metabolomics is expensive work, which might be one reason we've not heard of anything yet - apart from the Gordon/Naviaux replication(s) already underway.
More conference updates coming up soon.
I wasn't at the conference and just saw bits on Livestream, but maybe @charles shepherd would know. It's great idea, and I wondered at the time if someone would try that. There are 300 mecfs patients in the biobank (well, their blood
) as well as 50+ MS patients - these could be useful sick controls, controlling to some extent for inactivity. But metabolomics is expensive work, which might be one reason we've not heard of anything yet - apart from the Gordon/Naviaux replication(s) already underway.More conference updates coming up soon.
trishrhymes
Senior Member
- Messages
- 2,158
Thanks so much for those kind words, Janice.
I wasn't at the conference and just saw bits on Livestream, but maybe @charles shepherd would know. It's great idea, and I wondered at the time if someone would try that. There are 300 mecfs patients in the biobank (well, their blood
More conference updates coming up soon.
Surely this is the sort of thing we should support, using resources already gathered in the biobank and building on the work of Naviaux and others. Much more productive in my view than a MEGA fatigue study.
Simon
Senior Member
- Messages
- 3,789
- Location
- Monmouth, UK
2. Professor Ann McArdle on mitochondria: mecfs patients look much like those of elderly people
She gave an intro to muscles, and pointed out that one feature of muscles is that they can adapt, wtih bulk increasing in response to training (illustrated by a photo of Arnie in his prime). She said that free radical generation is particularly important in adaptation and maintenance of healthy muscle (yes, free radicals, which often crop up in mecfs research).
In 'old muscles' (muscles in older people) don't respond like young muscles do. In young muscles, muscle production is boosted by increasing levels of free radicals. In old muscles free radical levels are already high, and don't increase further.
McArdle also noted that muscle weakness was a secondary consequence of many inflammatory disorders
Results
Data is still being analysed and these are preliminary findings.
Looking at muscle fibres, volunatry contraction was diminished in cfs patients (as seen in other studies) but contraction when electrically stimulated was normal. Again, said McArdle, this is very similar to what they see in old age.
They also saw evidence of elevated cytokine levels in patients relative to controls. Work in mice has shown that elevated cytokine leves are linked with elevated free radical production (the same free radical production that causes problems in older people). Another mouse study, transplanting mice muscles, showed that young mice muscle acted like old muscle when transplanted into old mice (which have an inflammatory environment ie increased cytokines).
Overall, there seem to be a link between cytokine production, an inflammatory environment, free radical production and problems with muscle functioning (free radical production is mostly from mitochondria) in the elderly.
This study has found the cytokine component showing up in patients (and analysis is ongoing). Curiously, IL-6 and IL-10 were increased, as they were intially in the alpha-interferon study above. And they found that muscles in patients behaved in a similar way to those in older people (struggling to generate force).
The group are also working on treatments to help muscle performance in older people, which might be applicable to mecfs patients. The ME Association helped fund this work in addition to the MRC.
3. sleep treatment study (found an alarmingly high rate of sleep disorders in patients) Sue Wilson
This study was formed on the basis that CFS patients don't get enough refreshing "Slow wave sleep" (SWS), and fixing this might help patients.
Patients came in t hospital for 5 days/4nights, twice. Once was with placebo, once with the drug, sodium oxybate.
The study used sodium oxybate to successfully increase SWS in CFS patients, but at least on the outcome data they've analysed to date, there was no significant improvements in symptoms/function (including cognitive function).
The most striking finding of the study, instead, was the number of screened patients who had sleep breathing disorders (which means they were excluded from the study). From the graph, it looked like over half. Wilson said this was 'many more than expected'. She noted some other research (Julia Newton? my guess) had made a similar observation.
In fact, one of the main conclusion, said Wilson, was that they should try to put together an expert group to discuss these very high levels of co-morbid sleep disorders,, and whether it suggested treatment strategies that could help (Wilson didn't say if some of these sleep disorders could account for some patients problems ie an alternative diagnosis rather than a co-morbid disorder).
That's it.
She gave an intro to muscles, and pointed out that one feature of muscles is that they can adapt, wtih bulk increasing in response to training (illustrated by a photo of Arnie in his prime). She said that free radical generation is particularly important in adaptation and maintenance of healthy muscle (yes, free radicals, which often crop up in mecfs research).
In 'old muscles' (muscles in older people) don't respond like young muscles do. In young muscles, muscle production is boosted by increasing levels of free radicals. In old muscles free radical levels are already high, and don't increase further.
McArdle also noted that muscle weakness was a secondary consequence of many inflammatory disorders
Results
Data is still being analysed and these are preliminary findings.
Looking at muscle fibres, volunatry contraction was diminished in cfs patients (as seen in other studies) but contraction when electrically stimulated was normal. Again, said McArdle, this is very similar to what they see in old age.
They also saw evidence of elevated cytokine levels in patients relative to controls. Work in mice has shown that elevated cytokine leves are linked with elevated free radical production (the same free radical production that causes problems in older people). Another mouse study, transplanting mice muscles, showed that young mice muscle acted like old muscle when transplanted into old mice (which have an inflammatory environment ie increased cytokines).
Overall, there seem to be a link between cytokine production, an inflammatory environment, free radical production and problems with muscle functioning (free radical production is mostly from mitochondria) in the elderly.
This study has found the cytokine component showing up in patients (and analysis is ongoing). Curiously, IL-6 and IL-10 were increased, as they were intially in the alpha-interferon study above. And they found that muscles in patients behaved in a similar way to those in older people (struggling to generate force).
The group are also working on treatments to help muscle performance in older people, which might be applicable to mecfs patients. The ME Association helped fund this work in addition to the MRC.
3. sleep treatment study (found an alarmingly high rate of sleep disorders in patients) Sue Wilson
This study was formed on the basis that CFS patients don't get enough refreshing "Slow wave sleep" (SWS), and fixing this might help patients.
Patients came in t hospital for 5 days/4nights, twice. Once was with placebo, once with the drug, sodium oxybate.
The study used sodium oxybate to successfully increase SWS in CFS patients, but at least on the outcome data they've analysed to date, there was no significant improvements in symptoms/function (including cognitive function).
The most striking finding of the study, instead, was the number of screened patients who had sleep breathing disorders (which means they were excluded from the study). From the graph, it looked like over half. Wilson said this was 'many more than expected'. She noted some other research (Julia Newton? my guess) had made a similar observation.
In fact, one of the main conclusion, said Wilson, was that they should try to put together an expert group to discuss these very high levels of co-morbid sleep disorders,, and whether it suggested treatment strategies that could help (Wilson didn't say if some of these sleep disorders could account for some patients problems ie an alternative diagnosis rather than a co-morbid disorder).
That's it.
Last edited:
Simon
Senior Member
- Messages
- 3,789
- Location
- Monmouth, UK
I'd like to see both - I don't think they are mutually exclusive alternatives.
- Messages
- 72
- Location
- UK
Are the ME/CFS Biobank samples in a form which could be used to look at the mitochondrial differences such as DNA damage, ATP profiles, etc. Maybe even mtDNA differences between neutrophils and thee various lymphocyte populations?
