ME/CFS Science

Not really. I think this group developed this tracer and suspected it might be relevant in Long Covid.

8) Here's the link to the paper:

Fujimoto et al. 2025. Systemic increase of AMPA receptors associated with cognitive impairment of long COVID.
academic.oup.com/bra...

7) Caveat: in the US, Perampanel has a boxed warning that it may cause serious psychiatric and behavioral changes (including homicidal or suicidal thoughts).

The Japanse researchers suggest it should be tested in the context of an official randomized trial.

6) The authors suggest that the anti-epileptic drug perampanel (brand name Fycompa , a competitive antagonist of AMPAR) could be a potential therapeutic target for cognitive symptoms in Long Covid.

5) The AMPAR signal correlated positively with the cytokine TNFSF12 (an immune signal involved in inflammation, cell growth, and tissue remodelling) and negatively with CCL2 (which calls white blood cells to areas where there’s inflammation or injury).

4) AMPA receptor density correlated with the results of cognitive tests, especially the picture naming and figure recall tasks of the RBANS assessment.

The researchers could differentiate patients and controls using the PET signal with 100% sensitivity and 91% specificity.

3) AMPA receptors are used in the brain for fast excitatory communication and have been associated with epilepsy.

The researchers tested 30 Long Covid patients and 80 controls and found patients had more AMPA receptor signal than controls and this was the case across the brain.

2) PET scans use a radioactive tracer that bind and lights up certain molecules in the body.

The Japanese group recently developed a new [11C]K-2 tracer which binds with Glutamate α-amino-3-hydroxy-5-methyl-4-isoxazole propionic acid (AMPA) receptors.

1) 🇯🇵 Japanese researchers found that Long Covid patients have more glutamate AMPA receptors in the brain than controls using PET scans.

This difference correlated with results of cognitive tests and various cytokines.

This is a troll account, but if anyone is wondering: the DecodeME study used a strict genome-wide significance of 0.00000005.

So the results were not 'mined' but properly corrected so that differences are unlikely due to chance or random variation.

Our blog explains why small effects such as these are still important (the SNPs are pointers to the pathology; their effect size is less important).

The SNPs are all quite common. So most ME/CFS patients will have some of them (as will most controls without ME/CFS).

YouTube video by David M Tuller Interview with Professor Chris Ponting about the DecodeME results.

Prof. Ponting explained in this interview with David Tuller (minute 3:06)

"In fact, I have argued that this, the associations that we have found, represent causal associations..."

youtu.be/CGUmcB_YIaA?...

Yes, smoking causes lung cancer, even though not all smokers get cancer, and not all lung cancers are caused by smoking.

Similarly, genetic effects found in GWAS point to causal relationships with ME/CFS (not mere correlations), even though you can have the disease without these DNA variants.

Helpful blog about ME/CFS GWAS results from DecodeME Medsky 🖥️🧬 🩺🧠

#MEcfs #DecodeME
#LongCovid

This is an excellent read for anyone wanting to understand more about the DecodeME study, what it might mean and what comes next.

Sorry, didn't quite understand what you mean, could you rephrase?

DecodeME: the biggest ME/CFS study ever - ME/CFS Science The first results of DecodeME are in, the largest research project ever undertaken on myalgicContinue readingDecodeME: the biggest ME/CFS study ever

7) Here’s the link to our article:

6) We plan to delve deeper into the implicated genes and pathways in a second blog post, but zooming out, it is already clear that the genetic data of ME/CFS patients mostly point to the brain.

If ME/CFS were a war, it seems that the brain would be its main battlefield.

5) We also compared the DecodeME data to illness categories in the UK Biobank to test which diseases show the strongest genetic correlation with ME/CFS (something that wasn't reported yet in the preprint).

4) Since the findings came out, we have read many genome-wide association studies (GWAS) and, with the help of people on the S4ME forum, explored complex genetic tools such as FUMA, MAGMA, LDSC, etc.

3) We therefore think it’s worth digging deeper into the DecodeME summary data (which is publicly available) to understand what it means for ME/CFS research.

Our blog tries to explain the methodology in simple terms so that readers with no genetic background can follow along.

2) DecodeME is by far the biggest study on ME/CFS ever done. It may not have caused a big breakthrough, but it adds an important piece to understanding the puzzle of ME/CFS.

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

Specialised care for severely affected ME/CFS patients A specialised care unit for severely and very severely ill ME/CFS patients opened in 2021. The results from the first 3 years are reported.People with ME/CFS who were diagnosed according to the Can...

10) Link the full paper which is open-access:

Saugstad et al. 2025. Specialised care for severely affected ME/CFS patients.

9) Of 31 patients that were admitted, 4 did not have their ME/CFS diagnosis (Canadian criteria) confirmed and two others stayed for less than 2 months. For the 24 included in the study, the mean duration of stay was one year.

8 ) The unit also included a research part but unfortunately, they were unable able to monitor and assess the patients as closely as they anticipated. This was because some patients were so ill they could only whisper a few words and could not wear a smartwatch.

7) Approximately 30% of the 24 patients benefited significantly from their stay, and about half showed some improvement.

Others, however, were unsatisfied with their stay. Complaints included a shortage of staff, lack of training, and incomplete sound isolation of the rooms.

6) The unit offers a four-step supportive therapy program. It consists of off-label treatments high-dose thiamine, NADH, coenzyme Q10, and vitamin B12, low-dose naltrexone, and low-dose aripiprazole.