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ME/CFS Science Profile picture
@mecfsskeptic
Jun 27, 2019 • 7 tweets • 2 min read • Read on X
1) There’s a new interesting study out by a collaboration of ME/CFS patients and scientists.

They’ve sent Freedom of Information requests to 38 NHS specialist centers for ME/CFS and asked them about their information on harms by rehabilitative therapies such as GET or CBT.
2) The results are striking. Among the ME/CFS clinics surveyed, there was an almost universal absence of criteria for detecting harm, and no clinic reported any harm to have occurred in their patients, despite acknowledging that many dropped out of treatment.
3) No clinic reported telling patients explicitly that they could be worse after therapy than before. They only said that setbacks were possible (but temporary) or that the reported harms of GET are due to the treatment being wrongly executed.
4) So patients getting worse during treatment might think that their decline is due to something else.

The authors suggest this can result in a “misinformation loop”: the clinics say GET is safe, patients believe that and do not report harm, clinics think GET is really safe...
5) Or as the authors put it more eloquently: “if clinics presume that treatments are harmless, they will inevitably fail to record harms accurately.”

Another possibility is of course that patients do report harms but that clinics do not use or record this information.
6) The solution the authors propose is a national system for collecting information from patients who think they have been harmed by rehabilitative therapies such as GET, something similar to the Yellow Card Scheme for adverse effects arising from medical drugs or devices.
7) The study was published in The Journal of Health Psychology and can be found here: journals.sagepub.com/doi/abs/10.117…

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More from @mecfsskeptic

ME/CFS Science Profile picture
Sep 13
1) The Australian team of Christopher Armstrong wrote a paper on how Metformin might be useful as a treatment for ME/CFS and Long Covid.

They focus on the multiple pathways it impacts such as mTOR signalling. Image
2) Metformin is mostly known as a drug for type 2 diabetes as it lowers sugar levels in the blood.

In the 1950s, however, it was also used to treat Influenza because of its assumed anti-inflammatory properties.
3) Metformin was tested in acute COVID-19 to dampen inflammatory signalling and reduce negative outcomes in patients with diabetes and obesity.

pubmed.ncbi.nlm.nih.gov/34927127/
Read 7 tweets
ME/CFS Science Profile picture
Sep 12
1) Interesting interview of Prof. Ian Lipkin by David Tuller (@davidtuller1).

They not only talk about Lipkin's recent study showing heightened innate immunity in ME/CFS but also about past and future studies.

A brief summary 🧵 Image
@davidtuller1 2) Lipkin explained that in the 1990s, his team looked at whether Bornavirus might be the cause of ME/CFS. They found no evidence of that, but they did see immune activation (nonspecific polyclonal B-cell activation) in a majority of patients.
@davidtuller1 3) There was no money to pursue this further until a big donor provided funding because his son had ME/CFS. So in the mid-2000s, they set up a biobank and started looking at cytokine abnormalities in spinal fluid and blood.
Read 10 tweets
ME/CFS Science Profile picture
Sep 12
1) ME Research UK and the ME Association are funding more research on the electrical abnormalities found in blood cells of ME/CFS patients.

This builds on the work on the nanoneedle by Ron Davis and his team in 2019. Image
2) Funding goes to Dr Fatima Labeed (United Arab Emirates University), who authored the initial research, and Dr Jacqueline Cliff, who will host the work in her laboratory at Brunel University of London.
3) In a pilot study the researchers found that electrical properties of ME/CFS cells change differently after salt treatment than those of healthy controls and patients with multiple sclerosis. The sample size was however quite low (n = 17 ME/CFS patients).
Read 6 tweets
ME/CFS Science Profile picture
Sep 7
1) 🇳🇴 A new Norwegian study reports that ME/CFS patients have different DNA variants of killer cell immunoglobulin-like receptors (KIR) compared to controls.

According to the authors, this points to the involvement of natural killer cells in ME/CFS. Image
2) Natural Killer (NK) cells are a type of immune cell and have been implicated in ME/CFS for more than 30 years. The most consistent finding is reduced cytotoxicity of NK cells; their ability to destroy other cells.

Here's a recent review about this:
frontiersin.org/journals/immun…
3) NK cell functions are regulated by numerous receptors, including the inhibitory and activating killer cell immunoglobulin-like receptors (KIR).

This is what the Norwegian study looked at: they analysed DNA samples, looking at variants of genes encoding these inhibitory KIRs.
Read 10 tweets
ME/CFS Science Profile picture
Sep 3
1) A research team from Arizona university used Invasive cardiopulmonary exercise testing (iCPET) in ME/CFS and Long Covid patients.

They found that muscle oxygen diffusion was the most impaired parameter. Image
2) The authors used O2 pathway analysis, which breaks down oxygen transport into independent parameters. In ME/CFS and Long Covid patients, the problem seems to lie in the DM parameter, which stands for muscle diffusion capacity (moving oxygen from blood to muscle cells).
3) The authors note that cardiac filling pressures or pulmonary artery pressure were normal, indicating that heart failure is an unlikely cause.

Standard hemodynamics parameters at rest were also similar between patients and controls.
Read 8 tweets
ME/CFS Science Profile picture
Aug 30
1) 🇨🇦 In a new ME/CFS study, the research team of Alain Moreau reports that haptoglobin (Hp) might be a potential biomarker of PEM severity and cognitive impairment.

Its main function is to bind free hemoglobin that is released after the breakdown of red blood cells. Image
2) To trigger post-exertional malaise (PEM), the authors didn't use an exercise test but an inflatable cuff that gives pulsatile compressions to the patient's forearm.

(we have some doubts if this really triggers PEM).
3) Few proteins were significantly changed after the cuff test, but Haptoglobin stood out.

It was decreased in ME/CFS patients after the cuff test (1.84-fold change, p = 0.007), but not in healthy controls. Image
Read 10 tweets

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