International ME/CFS Conference of the Charité Fatigue Center on 11./12. May 2023 in Berlin, supported by the ME/CFS Research Foundation

Woman presenter
Treating orthostatic intolerance

Case study of 29 woman
range of issues, orthostatic intolerance, pupils slow to respond to light,
standing test - measure BP and pulse
no tea, coffee, no compression garments, no nicotine
do test in the morning, as symptoms get better later

people with ME/CFS have the highest standing heart frequency of the people she sees

Therapies for POTS
Some remissions in 1 to 3 years - maybe 50%
Get to know prodomal symptoms and avoid syncopes
In POTs, avoid lying in bed - but difficult with ME/CFS
raise blood volume 2 to 3 litres a day; salt; compression garments up to hips

EDS - many people in ME/CFS have this. this can be treated also with symptomatic therapy
Training of calf muscles - but difficult for ME/CFS

If symptomatic therapy doesn't help, drugs
pyridostigmine - has had good results in ME/CFS
fludrocortisone - can help especially in summer or when they have infections
beta blockers can affect ME/CFS
(other drugs mentioned very fast)

Approaches for the various types of OI are discussed
Exclude cardiac diseases

Need to be mindful of PEM, if possible, increased activity can help

Question about infusion of albumin. Presenter was not keen I think but talked about saline infusions. Guidelines don't recommend infusions because of risk of infection, but if they help the patient, then why not.
 
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I do wish people giving talks where they are allocated 15 minutes would practice beforehand and make sure it's no more than 10 minutes talking at normal speed, to allow time for getting set up and questions. Most of them faced with limited time try to get through more by talking faster. I can't keep up. Maybe scientists without ME can cope.
 
Hutan said:
New data - 6 years followup for rituximab and cyclo trials. Paper is coming
Very good participation in the followups
didn't find a difference in followup ritux; lasting benefits in the cyclo based on SF-36 PF
18% got to normal healthy level in cyclo; only around 8% in ritux and placebo
Also decreased worsening.
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Good to hear that they are doing a follow up on the cyclo-treated patients. IIRC the initial response rate was about 50%. If 18% of the initial responders are still responding, then about a third of the initial responders are still in remission or cured. Not too shabby.
 
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Jaybee00 said:
? Meaning she improved following a viral infection? Or that she was improving naturally and then got an infection which set her back?
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She was improving after treatment, did more activities but got a short setback after a viral infection. She continued to improve after that and was able to walk 10 000 steps compared with the 2000 steps she was able to do before treatment.
 
Thank you to @Hutan and @Trish for your sterling work throughout the night too.

Perrier said:
Does anyone know if this conference, these talks, will be on line at some point? You tube? Thanks
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I have just looked at Dr Hng's fb page and, as well as some discussion ( ME and EDS - are there any links, dysautonomia included), there is a link to Dr Prusty's talk. Haven't watched it yet.
 
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Tia said:
On 9th May, ME/CFS Research Foundation tweeted, "We are working to make recordings available after the conference (pending speakers consent). Also we intend to publish a results summary for patients and the public on our website."
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Thanks. Now to move on: there will be another ME conference in the UK. Does anyone have more details, so that we can register to watch. I registered early for Berlin conference, but I noted there was a point at which folks could not register. So, if anyone knows about the UK conference, many of us would be grateful. Thanks
Maybe this should be another thread; I can delete it after.
 
Tia said:
On 9th May, ME/CFS Research Foundation tweeted, "We are working to make recordings available after the conference (pending speakers consent). Also we intend to publish a results summary for patients and the public on our website."
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That's good to know. We're not allowing posting of videos or screenshots as they are explicitly not allowed in the conference terms and conditions and some speakers won't want their unpublished data made public yet. Obviously once videos are officially available members can link them here.

There's some discussion of Prusty's talk on this thread:
https://www.s4me.info/threads/research-news-from-bhupesh-prusty.13416/page-15#post-474580
 
Perrier said:
Thanks. Now to move on: there will be another ME conference in the UK. Does anyone have more details, so that we can register to watch. I registered early for Berlin conference, but I noted there was a point at which folks could not register. So, if anyone knows about the UK conference, many of us would be grateful. Thanks
Maybe this should be another thread; I can delete it after.
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Invest in ME conferences are not livestreamed. You have to pay to attend in person and I can't see anything about selling DVD's like previous years on the website.
Thread on it here:
UK: Invest in ME Conference 2023
 
Hi all,

So here are some comments and personal views from the conference :

-Still no effort to investigate ME/CFS cases not originating from viral infections. Not good.

-Very optimistic about the case presented by Oysten Fluge and anti-CD38 therapy. I had the chance to talk to him and show some associations of his work in CD38 with other findings in ME, more specifically purinergic signaling , DHFR,nitric oxide, tetrahydrobiopterin. Interestingly , apigenin (identified by machine learning) is a CD38 inhibitor : https://www.s4me.info/threads/apige...amelioration-of-me-symptoms.7872/#post-140372 . In the end of our talk he said : "send me whatever you have" :)))

Of note : One slide on Fluge's presentation has shown that there was no organ damage found in post mortem ME/CFS patients. I specifically asked him whether they looked at liver tissues and he said that they didn't. I then showed some Fibroscans of ME/CFS patients and asked him if they could test patients with Fibroscans.


-I was very happy to see the work presented by Leonard Jason (DePaul University) : machine learning and network analysis methods being used to try to identify key differentiators of ME/CFS vs HCs (see attached photo).

-Also the work by Nuno Sepuvelda who used data from Carmen Scheibenbogen and then applied machine learning algorithms. Quite possibly there will be a joint effort with Nuno who is very committed and enthusiastic for medical research and the use of mathematics / algorithms to crack ME/CFS. (see attached).

-And last but not least , I was able to speak with Dr Prusty. He is very specific to what he wants (which is good) , told me that one of the proteins he found can be found mainly in hepatocytes -as he knows my persistence with everything liver related- and told me to send him anything that I could share with him (which was nice).

3AAA6AD5-25CA-4237-A4FC-D8F38105856A.jpeg

38E52A09-D03F-4C46-9E75-0658C70B9EDC.jpeg
 
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About Nacul and the Canadian clinic
Trish said:
To try to be fair, those unevidenced things which also included mindfulness adn naturopathy were on a list of groups they provide for those who want them and also included pacing as an option. His comment about them seemed to be that they are support groups, rather than making any claim about them being treatment.

The core part seemed much more standard with consultation and advice with symptomatic treatments. And the drugs he mentioned he did talk about the importance of explaining to patients that they haven't undergone clinical trials.
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It's possible my quick notes were coloured by my view of a previous talk Nacul gave about the centre, and my disappointment then that he had not taken the opportunity to run a really science-based centre. I mean, the clinic could have been churning out studies, to refine treatments. Nacul has been at that centre for a while now.

Nacul made a lot of claims that the clinic service overall was helping, putting up multiple charts of SF-36 results (i.e. self-reported outcomes). That is a big part of what prompted my comment that the presentation was an ad. I don't think he said anything about the fact that some of those people will be recovering naturally, being still in the relatively early stages of their disease. Some would have improved in function a bit as they adjusted to their illness e.g. by giving up work. And, the situation is a subjective report collected in a situation where the patients who make it to the point where they are given a survey to fill out are going to be more likely to report improvements (survivorship bias, wanting to please the assessor, wanting to convince themselves that something is better).

For sure, it didn't sound as though anyone was being forced into a mindfulness course, and the fact that it's a group course is nice, and probably helpful. But I really don't like the courses being spread out like a buffet, with a course on pacing (which is just strategies for adapting to the constraints imposed by the disease) being given only as much weight as various alternative therapies. I mean, people can find other ways to get mindfulness and naturopathy if that's what they want. If the clinic didn't spend money on providing acupressure etc, then potentially they could see more people to give them useful advice on pacing and pem. I don't know how that centre is funded. If it's a government funded clinic, then I think it should be doing a lot more research to refine its therapy options.
 
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Trish said:
I think that only came up as an answer to a question. He seemed pretty keen on trying one drug after another and different doses - all without any clinical trial evidence or any indication that he's proposing to do any trials.
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This was the neurologist who has a relatively big ME/CFS practice. I think he said several times that it was important to review the effects of drugs and not persist with drugs that were not having an effect, I don't think it was said just in response to a question. It's a fair question, why were my comments less negative about this man than the Nacul clinic? I got more of an impression that the neurologist was thinking carefully about how a drug might be helping and was observing outcomes. But yes, for sure, we need a lot more trials to be being done.
 
Hutan said:
One woman, ill for 34 years. Her outcomes have improved. Her objective markers dipped for a bit, associated with a viral infection, and then continued to improve. she had tried rituximab earlier with no response.
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Jaybee00 said:
? Meaning she improved following a viral infection? Or that she was improving naturally and then got an infection which set her back?
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She showed a steady and substantial improvement over time, an upward curve. There was a dip for a bit when it turned out that she had a viral infection, but she returned back to the upward curve of improvement. So yes, she was improving, but the viral infection temporarily set her back.

Edit: yes, what @Lindberg said
 
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