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We've finally changed our name on social media to 'ME/CFS Science'. The main reason is that we kept getting people who were upset by our old name 'ME/CFS Skeptic', thinking that we were skeptical of ME/CFS rather than claims made about the illness. It's a bit generic but hopefully the content...

I already have a list of topics I would like to analyze and write about and not enough energy to do them all, unfortunately.

Social media summary: This brain scan study from Australia found differences between...

Question: has anyone made an overview of publicly available dataset on ME/CFS? For example a list with links to papers or repositories where the ME/CFS dataset is available and can be downloaded by anyone, perhaps classified by topics such as immunology, metabolomics ..., etc.?

I suspect it refers to the physical component score. The Sf-36 different subscales are grouped into a physical component score (PCS) and a mental component score (MCS). PCS is calculated from: Physical functioning Role limitations due to physical health Pain General health MCS is calculated...

Made this social media summary of the study: 1) Scientists from Oxford University used one of the most powerful brain scans (7 tesla MRI) and found different results for ME/CFS and Long Covid. 2) In the 24 ME/CFS patients, there were increased levels of lactate in the anterior cingulate...

Curious to read what you wrote in the letter @Jonathan Edwards

Do I understand their view correctly that Rituximab might work if applied long enough so that new plasma cells cannot be formed. If it is applied too briefly like in the phase III trial, the B-cells are targeted but the long-lived plasma cells might still be producing antibodies?

It also seems that they are p-hacking the database for all possible connections and then publish these in separate papers, which can be quite misleading.

Yes quite disappointing. This paper goes against all basic statistical principles. Hard to take the authors seriously after this.

I meant the true scientists, the people who really want to figure things out, discover truth etc, rather than academics making a career. The people who will win future Nobel prizes. I suspect that they simply ignore most of what gets published.

Seems like the sample size increased from 16 HC, 15 ME/CFS, and 15 LC to 25, 27 and 20 respectively.

It still find it weird that standards are so low in (medical) science. So how do real scientists deal with this: do they simply ignore 90% of the literature and only focus on results from labs/teams they know and trust?

The effects appear to be driven by sex and contraception use which were not properly matched between ME/CFS patients and healthy controls.

If we could get hold of the data, we could do this analysis ourselves and see if the result can be explained by sex and contraception. The paper states:

There was a massive sex difference between groups: 47% of controls were males compared to only 17% in the Canadian ME cohort. So what does frequency-matching mean in this context? Pretty much all of their measures were affected by sex, suggesting that the difference between ME and HC could be...

The emails are interesting. Garner and Flottorp appear very assertive and activitst-like. They try to get themselves on the committee and are very dismissive if guideline text doesn't mention psychological treatments and recovery, often suggesting that this will cause harm. They use COFFI and...

From the paper:

Don't quite understand why figure 32 (below) shows decreases in % change in zeta-potential in ME/CFS patients while on Figure 21 that Murph posted above, it seems that zeta-potential increased after 1.5 hours in the ME/CFS patients. Figure 32| Normalised ζ-potential data for PBMCs incubated...

Another questionnaire, The Revised Fibromyalgia Impact Questionnaire (FIQR, range 0-100), did show a significant difference between groups. The RLZ has a score of 62.3 (57.32 to 67.28) compared to 70.70 (64.90 to 76.50) in the control group, with lower scores being better. The p-value of the...