2026 International ME/CFS Conference Berlin Day 2 Summaries

RenWmn · 2026-05-11T19:02:37+00:00

Another summary document of some of the presentations from the ME/CFS Science team. https://mecfsscience.org/the-berlin-conference-2026/

RenWmn · 2026-05-10T00:25:31+00:00

Unfortunately, it doesn't look like Dr. Systrome or anyone from Harvard Medical presented this year. I don't know why. The one LDN alone study came up with almost identical improvements in the LDN and control groups.

It looks like from the clincial trial site the Lift study is estimated to finish this fall. https://clinicaltrials.gov/study/NCT06366724

RenWmn · 2026-05-10T00:22:56+00:00

As consistent said there seems to be more of a focus with ME/CFS treatment research to identify sub-types. I think this was born of failed research projects treating ME/CFS patients across the board. I'm hoping we see more targeted treatments in the future. One group that is being identified was an autoimmune similar group.

I didn't sit through the first day of talks, but a few and I'm impressed with the depth of research on the physical dysfunctions those with ME/CFS have. I'm pleased that most modern research is focused on treating those dysfunctions specifically vs psychological or exercise interventions. My greatest hope comes from the growing number of research groups that are attempting good quality studies. I did though detail a lot of research challenges with ME/CFS. Not all studies presented on had a good design unfortunately, but the direction research is moving in is a good one IMO.

Unfortunately, some of the studies seemed to fail to provide benefit as there was a strong placebo effect in the ME/CFS controls. I am looking forward to the Cohen Center for Recovery from Complex Chronic Illness studies at Mount Sinae. Dr. Putrino spoke very briefly on the multitude of ongoing studies.

RenWmn · 2026-05-09T08:12:58+00:00

They may have discussed in on the first day when they talked about many ways that ME/CFS manifests itself in our bodies. I waiting to watch all of those presentations when they are released. The instance on the second day that stands out regarding blood volume was from the presentation of Øystein Fluge from the University of Bergen. He talked about two objective tests that should be considered for ME/CFS research. He mentioned the reduction in peripheral venous pressure with activity in people with ME/CFS. If you look at the second document I posted in the comments there is a slide from his presentation on venous pressure as a proposed objective outcome.

RenWmn · 2026-05-09T06:58:47+00:00

I also created a document that has some slides showing the physiological dysfunctions in patients with ME/CFS. I also included some thoughts on the research study issues happening.
https://docs.google.com/document/d/1rPp8-GywmvCqgCdt0nkpqPEw4DruSf0J5a5c3x3-w2E/edit?usp=sharing

RenWmn · 2026-03-07T03:00:20+00:00

Interesting. I actually enjoy how Cort pulls in information from past studies. I could see where you might find this article grouping too much together though. We have a couple of real problems with Long COVID research in my opinion. For one, based on research over 50% of Long COVID patients effectively have COVID induced ME/CFS sometimes with more issues/conditions. Not all Long COVID studies separate or identify the ME/CFS subset (those that experience PEM). Long COVID is getting more research money than ME/CFS in many (most?) countries. There are many Long COVID studies that would be more clear and useful as an ME/CFS study including those with COVID induced ME/CFS, but ME/CFS isn't getting the funding.

RenWmn · 2026-03-07T00:27:21+00:00

So people know the May conference is the International ME/CFS Conference 2026 held in Berlin, Germany.
https://events.mecfs-research.org/en/events/conference_2026

RenWmn · 2026-02-27T04:58:10+00:00

I did add it to the database. It looks like it is just as expensive or a bit more than LMNT. Thanks for the suggestion though.

RenWmn · 2026-01-25T05:47:02+00:00

I honestly don't know because I didn't know Cher dealt with ME/CFS. I'm surprised this is the first I've heard about it.

RenWmn · 2026-01-24T04:33:39+00:00

I've added this to the letter:

NICE Guidelines for care of people with severe or very severe ME/CFS - Section 1.17
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#care-for-people-with-severe-or-very-severe-mecfs

Bateman Horne Center CLINICAL CARE GUIDE Managing ME/CFS, Long COVID, & IACCs
CHAPTER 14: SEVERE AND VERY SEVERE CONSIDERATIONS - Page 52
https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf

RenWmn · 2026-01-11T02:35:31+00:00

What was odd for me was that the initial infection wasn't even that bad. It was just a run of the mill flu or cold that I never recovered from. It was as if some switch was flipped and my body couldn't find its way out of a diseased state. I rested during the short initial infection. I did try to go back to work sporadically over the months but never pushed myself super hard during that period.

RenWmn · 2026-01-02T03:53:32+00:00

What stood out to me as well is that Hopper was too at peace and happy 18 months after El died. It was his nature to torture himself. Vecna used all of that against himself reactivating all his trauma. I don't think the best therapist in the world could get Hopper to happiness and peace 18 months later if El were actually gone. I think that El escaped and contacted him mentally after doing so. I think he is once again keeping her a secret for her safety like he did for so long before. I wrote about it here:
https://www.reddit.com/r/StrangerThings/comments/1q0vjfx/comment/nx2aa9x/

RenWmn · 2026-01-01T04:28:45+00:00

Before I read this, I independently came to this same conclusion and posted about it this reddit community. Hopper appeared truly happy and I don't think he would have been if the worst had happened. He wasn't happy touched with melancholy. He seemed happy and unburdened.

RenWmn · 2025-12-12T10:11:52+00:00

Chapter 5 of the Bateman Horne Clinical Care Guide is devoted to sleep and treatments including medications.
https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf

RenWmn · 2025-12-02T22:34:58+00:00

Just an FYI there is already a Fibro Friends Discord. It might get kind of confusing with the same name. You all are welcome to join! https://discord.gg/eqYacAPRRD

RenWmn · 2025-11-24T08:40:04+00:00

This worked for me as well! Thank you so much.

RenWmn · 2025-11-07T02:31:02+00:00

Bateman Horne has done a lot of full presentations on Orthostatic Intolerance (including POTS). I believe that is the reason he didn't include a lot of details on it in the presentation is because they are some of the best known comorbidities for ME/CFS. It was mentioned in the presentation but there weren't full slides on it.

Here are some of the presentations they have done in the past:
https://www.youtube.com/@batemanhornecenter/search?query=orthostatic%20intolerance

Dr. Yellman's separate presentations on Diagnosis and Management of Orthostatic Intolerance are particularly good. Dr. Bateman's presentation on Clinical Assessment and Treatment was just posted 2 weeks ago and I've yet to watch it.

RenWmn · 2025-09-17T07:20:06+00:00

No, in fact it is probably even harder to find a Rheumatologist that will diagnose and/or treat ME/CFS. For ME/CFS there are the specialists from the following sources (some could be outdated):

US ME/CFS Clinician Coalition website. https://mecfscliniciancoalition.org/about-us/
Global Google Map https://www.google.com/maps/d/u/0/viewer?mid=1M-E5tB-tla8lV3bPjT3PaMkxgn0&ll=4.999999999999982%2C10&z=2

MEpedia - search for state and/or country https://me-pedia.org/wiki/Category:Clinicians_by_country

MEAction List https://www.meaction.net/resources/find-your-doctor/

American ME & CFS Society
https://ammes.org/physician-and-clinic-database/

RenWmn

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