. Bit pompous quoting myself but I could see this coming.
IIME could do something really radical with their (PWMEs)money by bringing together everyone in the U.K. involved in ME biomedical research.
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IIME could do something really radical with their (PWMEs)money by bringing together everyone in the U.K. involved in ME biomedical research.
Andy
Retired committee member
For all the time I've been aware of them IiME have seemed to deliberately set themselves apart from not only the other ME/CFS organisations in the UK but also the whole research system in general. While I can understand why they may have done that in that past, I think that enough has changed to make it worthwhile working more collaboratively, but obviously they would have to come to the same opinion themselves for it to happen.
Given the range of reseachers who have spoken at IiMER conferences, I don't think it's fair to say they have set themselves apart from the whole research system. I think it was understandable in the past that the wanted to stay separate from some organisations that still gave a place to bps views.
Andy
Retired committee member
I said
So I don't agree, obviously they are open to individuals and specific organisations, but their positioning in general is to be, and be seen to be, as outsiders, which I don't think is as useful overall as it used to be.
I agree that the picture in the UK with ME organisations has changed, so it would be good to see IiMER inviting all biomedical ME researchers in the UK to their conferences, as well as international researchers. I don't have inside knowledge on who gets invitations, or whether they open their conferences and colloquiums up to any researchers to apply to participate.
JemPD
Senior Member (Voting Rights)
i agree
that is the impression i have had as well.
I wonder what actual use any of these conferences are tbh. Not necessarily IIME but generally. Perhaps i am just feeling negative, but over the last 20yrs there have been so many confrences/gatherings etc but little ever seems to come of them. They are preaching to the choir & everyone seems very enthusiastic during/afterwards but no actual progress ever seems to be made. Perhaps they are useful in ways i am not aware of as a non-researcher, but having been to plenty of 'conferences' in my respective fields in my former healthy life, they were generally about lots of people who think generally the same things, all getting together & having a nice time, but i rarely got anything out of it that was profitable.
I dunno, maybe they are very useful, but its hard as a patient when your life is slipping away. I've heard so much talk over the yrs that i no longer pay any attention to the conferences, other than keeping a vague eye on S4 in case something significant suddenly comes out of them.
I think the point and usefulness of science conferences comes largely from the contacts made and conversations behind the public stage. Don't forget the IiMER public conference is preceded by a couple of days of private meetings between researchers where they can talk more openly about their work and ideas.
JemPD
Senior Member (Voting Rights)
yes good point Trish
Binkie4
Senior Member (Voting Rights)
https://www.linkedin.com/pulse/inte...&utm_medium=member_ios&utm_campaign=share_via
Link to report on the International Conference dated 10th June 2023 tweeted by Invest in ME. Apologies for brevity of description of contents but I have very little energy. It is not a video of the presentations which will be posted at a later date.
It says they decided at the last minute to try to stream the event live but this wasn't possible for various reasons.
"The charity made extraordinary efforts to plan and arrange these events despite having constraints and hurdles to overcome - both in resources available and with personal considerations of the trustees. However, the value is in the outcome and we are pleased that we have had so many positive comments from delegates."
They will be making a video of the Conference and placing it on their website.
Link to report on the International Conference dated 10th June 2023 tweeted by Invest in ME. Apologies for brevity of description of contents but I have very little energy. It is not a video of the presentations which will be posted at a later date.
It says they decided at the last minute to try to stream the event live but this wasn't possible for various reasons.
"The charity made extraordinary efforts to plan and arrange these events despite having constraints and hurdles to overcome - both in resources available and with personal considerations of the trustees. However, the value is in the outcome and we are pleased that we have had so many positive comments from delegates."
They will be making a video of the Conference and placing it on their website.
Binkie4
Senior Member (Voting Rights)
MEResearch UK has tweeted a link to some details of the Invest in ME Conference.
https://www.meresearch.org.uk/invest-in-me-conference-highlights-part-1/
"The conference provided the opportunity for researchers, clinicians, people with ME/CFS and carers to listen to the latest research and clinical developments relating to the disease. Those presenting their work at the conference, and at the colloquia which preceded it, included ME Research UK-funded researchers such as Dr Bhupesh Prusty, Dr Kiran Thapaliya and Prof. Elisa Oltra.
Key topics discussed included:
https://www.meresearch.org.uk/invest-in-me-conference-highlights-part-1/
"The conference provided the opportunity for researchers, clinicians, people with ME/CFS and carers to listen to the latest research and clinical developments relating to the disease. Those presenting their work at the conference, and at the colloquia which preceded it, included ME Research UK-funded researchers such as Dr Bhupesh Prusty, Dr Kiran Thapaliya and Prof. Elisa Oltra.
Key topics discussed included:
- The diverse, multifactorial and complex nature of ME/CFS;
- Viruses, in particular viral reactivation, and viruses in the gut microbiome;
- The need to look at all areas of research relating to ME/CFS in different groups – for example, by sex, age, and length of illness;
- The need for collaboration, where researchers from different areas work together.
The diverse, multifactorial and complex nature of ME/CFS
When I hear those kind of statements I take it to mean that there is still too much focus on the broad downstream consequences of whatever is wrong. Not on locating the primary underlying mechanism driving all this.
Cue suggestions of simplistic reductionism.
When I hear those kind of statements I take it to mean that there is still too much focus on the broad downstream consequences of whatever is wrong. Not on locating the primary underlying mechanism driving all this.
Cue suggestions of simplistic reductionism.
Sly Saint
Senior Member (Voting Rights)
Report and presentations available on website:
http://www.investinme.org/IIMEC15.shtml
http://www.investinme.org/IIMEC15.shtml
I watched Vicky Whittemore's talk. My main takeaway from it was that her job seems to be mostly coordinating between multitudes of different departments and agencies, and how unwieldy such big organisations as NIH and the CDC are.
On research funding for ME/CFS, she said it dropped from about 15 million annually to significantly less in 2022, I think mainly because of Covid and delays in decisions on whether to give another 5 years funding to the 4 research centres funded last time. The Cornell team led by Maureen Hanson and the data centre have both been funded but the decision on the other 2 isn't sorted yet.
She said there should be a rise to closer to 20 million this year - or maybe next year, I've forgotten.
A question from the audience was how close she thinks we are to a biomarker. She said she thought quite close to several possible biomarkers, but that because ME/CFS is so heterogeneous, it's more likely to be a panel of biomarkers, presumably for subgroups.
The bad news was that she went on to say that finding biomarkers is just the first stage of a very lengthy process of getting them approved to be used for diagnosis for people to get insurance to cover paying for tests.
She didn't talk about the NIH Intramural study as Avi Nath was the next speaker so she was leaving it to him. It looks like there isn't a video of his talk, which is disappointing. Maybe he revealed some unpublished data.
On research funding for ME/CFS, she said it dropped from about 15 million annually to significantly less in 2022, I think mainly because of Covid and delays in decisions on whether to give another 5 years funding to the 4 research centres funded last time. The Cornell team led by Maureen Hanson and the data centre have both been funded but the decision on the other 2 isn't sorted yet.
She said there should be a rise to closer to 20 million this year - or maybe next year, I've forgotten.
A question from the audience was how close she thinks we are to a biomarker. She said she thought quite close to several possible biomarkers, but that because ME/CFS is so heterogeneous, it's more likely to be a panel of biomarkers, presumably for subgroups.
The bad news was that she went on to say that finding biomarkers is just the first stage of a very lengthy process of getting them approved to be used for diagnosis for people to get insurance to cover paying for tests.
She didn't talk about the NIH Intramural study as Avi Nath was the next speaker so she was leaving it to him. It looks like there isn't a video of his talk, which is disappointing. Maybe he revealed some unpublished data.
Kalliope
Senior Member (Voting Rights)
I watched the talk by Dr. Dag Storla who is the doctor at Røysumtunet, an institution with an offer for severe ME patients in Norway.
I've heard about people making improvements there, and was interested in what kind of treatment programme they have.
Dr. Storla talked about 4 steps in their medical treatment plan, where each step is tried out for 2 months:
1. Thiamine (vitamin B1), ORS (Oral Rehydration Salt)
2. NADH, Q10, B12
3. Low dose naltrexone
4. Low dose Aripiprazol (Abilify)
14 severe ME patients have had the full treatment (all 4 steps).
8 of them improved from very severe to severe or better. 6 improved within the same grade.
2 severe ME patients have had partial treatment.
1 of them neither improved or worsened, the other improved within the same grade.
3 severe ME patients have had no treatment (they didn't want to) and are unchanged.
Sadly they are not performing any research or making any trial out of this.
In addition to this treatment plan there is a staff with among other nurses, occupational therapist, physician (dr. Storla), physical therapist, psychologist, nutritionist.
I've heard about people making improvements there, and was interested in what kind of treatment programme they have.
Dr. Storla talked about 4 steps in their medical treatment plan, where each step is tried out for 2 months:
1. Thiamine (vitamin B1), ORS (Oral Rehydration Salt)
2. NADH, Q10, B12
3. Low dose naltrexone
4. Low dose Aripiprazol (Abilify)
14 severe ME patients have had the full treatment (all 4 steps).
8 of them improved from very severe to severe or better. 6 improved within the same grade.
2 severe ME patients have had partial treatment.
1 of them neither improved or worsened, the other improved within the same grade.
3 severe ME patients have had no treatment (they didn't want to) and are unchanged.
Sadly they are not performing any research or making any trial out of this.
In addition to this treatment plan there is a staff with among other nurses, occupational therapist, physician (dr. Storla), physical therapist, psychologist, nutritionist.
Tom Kindlon
Senior Member (Voting Rights)
Invest in ME conference – highlights part 2 by ME Research UK
As already discussed in part 1, the talks at the Invest in ME conference reflected the complex and multi-system nature of ME/CFS. This was particularly clear from evidence relating to differences between people with ME/CFS and healthy people (known as ‘controls’), as well as some differences that are still theoretical.
Four areas emerged, and the main takeaway messages from each are summarised below, before we look at them in more detail.
Takeaway messages
Cardiovascular system, respiratory function and energy metabolism
Dr David Systrom: People with ME/CFS had impairments in the maximum amount of oxygen that could be used by the body one time during intense exercise (aerobic capacity).
Identification of metabolic profiles
Prof. Karl Johan Tronstad: Differences in compounds related to metabolism that may indicate a level of energetic strain were identified in people with ME/CFS; these changes were grouped into three distinct profiles that may be associated with disease severity.
Immune system and energy metabolism
Prof. Maureen Hanson: One form of T-cells from people with ME/CFS showed evidence of metabolic changes compared with those from healthy controls, indicating T-cell exhaustion which may be indicative of chronic immune alterations in people with ME/CFS.
Immune system and mitochondrial dysfunction
Dr Bhupesh Prusty: Reactivation of a specific human herpes virus in only a few cells could lead to an inflammatory response across multiple systems in the body in people with ME/CFS.
Continues at:
https://www.meresearch.org.uk/invest-in-me-conference-highlights-part-2/
I've started a thread for Alain Moreau's talk.
Sasha
Senior Member (Voting Rights)
Not just everyone in the UK but everyone in the world.
Sasha
Senior Member (Voting Rights)
That could be arranged online, though. I think it's time that international academic conferences moved away from flying about all over the place. It's bad for the planet and the need to set aside tons of time to travel, and the high cost of planes and hotels, is a block on getting everybody together who needs to be.