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.

 

Klaus Wirth on vascular dysfunction
That's me done, sorry

 

Thanks for all your notes. I'm done too.

 

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.

 

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as they are explicitly not allowed in the conference terms and conditions and some speakers won't want their unpublished data made public yet.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

 

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

 

About Nacul and the Canadian clinic

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.

 

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.

 

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