ME/CFS Science Profile picture
In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Jul 5 8 tweets 3 min read
1) An overview of positive developments in ME/CFS research 👇

The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect five biobanks across the continent.
2) In the UK, the government invested £4.75 million in SequenceME. It will measure the whole genome of thousands ME/CFS patients in high resolution so that rare mutations can be found.
Jul 3 10 tweets 3 min read
1) 🇧🇪 In Belgium, the Federal Knowledge Centre (KCE) published a 144-page report on ME/CFS.

It measured the healthcare needs and priorities of ME/CFS patients (shown in the graph below) and recommends investments in research and specialist centres for ME/CFS. Figure 25 - Priority rating of need categories in people with ME/CFS (n=744) 2) The KCE makes scientific reports to guide policy. This report is part of the NEED project, which aims to identify healthcare needs in multiple medical conditions. They did a survey of 749 ME/CFS patients and conducted in-depth interviews with 19.
Jun 29 10 tweets 3 min read
1) 🇯🇵 A Japanese group published their hypothesis of Long Covid.

They suspect SARSCoV-2 causes a reactivation of another virus (HHV-6B) in the olfactory bulb where it produces a protein (SITH-1) that reduces acetylcholine levels in the brain.

Let's have a closer look... Image 2) These researchers had previously done a mouse experiment where SARS-CoV-2 spike (S1) protein in the nasal cavity caused fatigue- and depression-like symptoms and reduced acetylcholine.

Symptoms were improved with the drug donepezil (an acetylcholinesterase inhibitor)
Jun 23 8 tweets 2 min read
1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months. Table 3. Prevalence of food insecurity in the previous 12 months, according to disease severity, among 333 people with ME/CFS or Long Covid. 2) Food insecurity was defined as ‘sometimes’ or ‘never’ being able to afford to eat properly, or ‘sometimes’ or ‘always’ having food run out, eating less, eating less variety due to cost, relying on others for food or using food grants/banks.
Jun 16 8 tweets 2 min read
1) This review found that people with ME/CFS are profoundly impacted by stigmatisation and that it also affects their social circles, such as friends and family.

The most frequently identified issue was stigmatising experiences by healthcare professionals and physicians. Image 2) The review found 44 studies on the topic of stigmatisation and ME/CFS, but the majority (68%) only addressed it as a secondary or peripheral topic.

Most studies were on adult women with ME/CFS. There were hardly any studies that focused on children or the experiences of men.
Jun 4 8 tweets 3 min read
1) Some thoughts on this new paper and what it means for 2-day cardiopulmonary exercise testing (CPET) protocol in ME/CFS.

For a long time, this was one of the most valuable and replicated findings in ME/CFS research, with patients failing to replicate objective exercise values. 2) This new paper by Natelson’s team doesn’t fully reverse that. It’s not the biggest study on this topic and most previous studies did find an effect.

See reviews here and here:
pmc.ncbi.nlm.nih.gov/articles/PMC77…

tandfonline.com/doi/full/10.10…
May 30 18 tweets 5 min read
1) Impressive paper from Iwasaki’s lab pointing at autoimmunity in a subgroup of Long Covid patients. They replicated previous experiments of human antibody transfer causing symptoms in mice.

A couple of findings that stand out… Image 2) They extracted antibodies from blood and found that those from LC patients more often reacted to brain tissue such as the thalamus or locus coeruleus. However, after accounting for sex and age, only the results for mouse meninges were significant. Image
May 28 10 tweets 3 min read
1) An NIH study found that ME/CFS and Long Covid patients have reduced levels of norepinephrine and its metabolites in the cerebrospinal fluid.

The norepinephrine reduction correlated with clinical measures such as fatigue, handgrip strength, and general health. Self-made plot of the main results showing reduced cerebrospinal fluid concentration levels of norepinephrine + DHPG + MHPG in patients with ME/CFS and Long Covid. 2) This was first reported in the famous intramural NIH study on ME/CFS. Unfortunately, the sample size of that study was tiny (n = 16), so they also tested it in Long Covid patients from the Neuro-PASC study.

Patients with Parkinson's were included as disease controls.
May 26 28 tweets 6 min read
1) There's an interesting lead in the ME/CFS genetic data: the eccentric medium spiny neuron (eMSN), a cell type in the brain discovered only a couple of years ago.

All based on preliminary findings, but the data looks rather interesting. Image 2) We have previously discussed how genetic data strongly points towards the brain in ME/CFS to synapses, neuronal communication, and even glutamatergic signals

But this is still quite vague and nonspecific.
May 19 10 tweets 2 min read
1) Researchers from the Department of Psychiatry and Psychotherapy in Leipzig highlight that evidence for psychological factors in ME/CFS and Long Covid remains limited and speculative.

They warn that psychologising these conditions carries significant risks. Image 2) The first risk caused by activation, such as graded activity. Psychological models often assume a vicious cycle of deconditioning. So treatment consists of pushing patients to extend their perceived limits.

In ME/CFS and Long Covid, however, this may cause deterioriation.
May 18 17 tweets 3 min read
1) Independent researcher Paolo Maccalini published an impressive paper implicating synaptic function in various brain regions in the pathology of ME/CFS. It’s based on three major genetic studies, including DecodeME.

The most replicated signal was for glutamatergic synapses. Image 2) He used the DNA results of more than 15.000 ME/CFS patients from DecodeME, but managed to add genetic data on 3891 ME/CFS cases from the Million Veteran Program (MVP) using a meta-analysis.
May 16 10 tweets 4 min read
1) With genetic evidence pointing to the brain, there is renewed interest on the S4ME forum for the buspirone tests done in the 1990s.

A couple of small studies found an increased prolactin response in ME/CFS patients but these findings were never studied further. Graph showing prolactin responses for evening, morning and one hour after buspirone are shown for ME/CFS patients and controls. Bars indicate standard error. 2) Buspirone activates serotonin receptors in the hypothalamus and hippocampus. At the time, ME/CFS was often (but incorrectly) viewed as an atypical form of depression where the serotonin pathway was already implicated.

Suspect that was one reason for doing this test.
May 7 4 tweets 2 min read
Michelle James from Harvard says the TPSO whole body imaging results were very striking and blew her away. Says there's undeniably something significant going on.

Most signal is found in the shoulders, postural muscles, the neck, glutes but also in the bone marrow. Image
Image
Surprisingly: she found a decreased TPSO signal in the brain in ME/CFS, while they expected an increased signal due to microglia activation Image
May 5 6 tweets 2 min read
1) The Selin lab has received Solve ME/CFS grant to continue its work on T-cell receptors in ME/CFS. They have formed a collaboration with Harvard immunologist Ayano Kohigruber to study what the T-cells are responding to. Image 2) Dr. Lisa Selin has been studying T-cells in ME/CFS for a long time, finding subtle clues that point to T-cell exhaustion and Increased ratio of CD4+CD8+ T cells. She suspects this reflects problems keeping persistent pathogens such as Epstein-Barr virus under control.
May 2 11 tweets 3 min read
1) There's a new review on Long Covid by Mark Faghy and (many familiar) co-authors.

I wanted to zoom in on their section on post-exertional malaise (PEM). I'm a bit skeptical, for example, about their statement that 50-80% of Long Covid patients experience PEM. Image 2) The review makes clear that most guidelines from the WHO, CDC, NICE and World Physiotherapy do not recommend graded exercise therapy (GE) for Long Covid patients with PEM.
Apr 1 10 tweets 3 min read
1) 🇧🇷 A big trial from Brazil reports that the antidepressant fluvoxamine improved fatigue in Long Covid patients while the diabetes drug Metformin had no effect.

The effect of fluvoxamine unfortunately looks quite small and it's unclear if it is clinically significant. 2) This was a big trial with 150 participants getting fluvoxamine (100 mg twice daily), 111 metformin (750 mg twice daily), and 138 a matched placebo pill.

The trial used Bayesian analysis with early stopping; they collected data until interim analyses showed a clear result.
Mar 23 10 tweets 3 min read
1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties.

The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease.

A brief summary... Image 2) Healthcare data from Norway had previously suggests that Incidence age is bimodal for ME/CFS. This study checked this pattern using two big sources: the DecodeME study and a large European survey with more than 8000 respondents.
Mar 21 18 tweets 3 min read
1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years.

A longread with separate chapters on:

- viral persistence
- cytokines
- neuroinflammation
- antibodies
- immune cells such as NK, B, and T cells Image 2) One of the major findings is that current evidence in blood does not point to (low-grade) inflammation as driving ME/CFS symptoms.

This probably means that it’s either hidden (in tissue) or involves an entirely different immune pathway.
Mar 8 10 tweets 2 min read
1) 🇩🇪 This German study will test the feasibility of home-based diagnostics in patients with severe and very severe ME/CFS (Bell score < 30).

They plan to take blood and saliva samples, questionnaires and measurements such as ECG, ultrasound, pupillary responses, HRV, etc. Image 2) The authors argue that this is urgently needed because these patients are often excluded from research:
"A central limitation of the current body of research is the insufficient inclusion of patients with severe and very severe ME/CFS into clinical studies."
Feb 21 9 tweets 3 min read
1) The ME Association collaborated with the research team of Prof. Sarah Tyson to develop a new questionnaire for assessing ME/CFS symptoms: The Index of ME Symptoms (TIMES).

It assesses 58 symptoms grouped into 9 domains. Image 2) The TIMES questionnaires is based on the DePaul Symptom Questionnaire (DSQ) but the authors adapted it to make it more suitable for clinical assessment (rather than diagnosis).

The goal is to make this part of a suitable ME/CFS toolkit for healthcare professionals.
Feb 18 7 tweets 2 min read
1) The ME Association is funding a new study on neuroimmune biomarkers for ME/CFS and Long Covid.

It will use the new NULISA technology to measure hundreds of proteins linked to the immune system and brain, including many that are too few to detect with standard tests. Image 2) The project will be based at the UK Dementia Research Institute’s Fluid Biomarker Laboratory.

It's led by Sophie Hicks, Research Assistant at UCL Institute of Neurology, who has family members with ME/CFS and Long Covid.