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Using the medicine subreddit to observe attitudes towards ME/CFS, I think there has been a shift. The JAMA article by Komaroff in particular seemed to make a particularly big impact. This video is good too: easy to understand without going into technical details or controversy, with a positive...

The promise of patient involvement means nothing. PACE had patient involvement. This promise is just to try and keep us calm while Cochrane protects corrupt and incompetent researchers that are harming patients. Maybe the next review will be good but there's not much to be hopeful about.

May I suggest including a strong recommendation to Cochrane to consult actual experts in exercise and ME/CFS. The people who have actually been studying how exercise affects ME/CFS oppose graded exercise therapy and believe that patients suffer from a broken aerobic system that cannot be fixed...

Before the talk by van den Brink, I wrote to many members of the European parliament. One of them, Irina von Wiese, responded. Some of what she said seems important: she said that she had received many letters about this (she represents the United Kingdom) and that the budget of the EU will come...

@Jonathan Edwards you offered your help to a Danish patient organization. Can you say anything about the situation in Denmark yet?

In fibromyalgia, chronic fatigue syndrome, multiple sclerosis and healthy controls. 120 participants in total. https://clinicaltrials.gov/ct2/show/NCT03807973?recrs=ab&cond=Chronic+Fatigue+Syndrome&draw=2&rank=11 The start date is listed as September 30, 2019.

It is of course a coincidence that all 5 proposals would have made GET look worse.

Very interesting.

I was browsing research and noticed that some harmful effects of hypoxia on the brain are delayed by days or even a week. The affected person appears to recover from the immediate effects but then has a delayed and marked worsening of brain health. This is in cases of major hypoxic brain damage...

Do you remember where you read this?

The multiannual financial framework may be an opportunity for ME/CFS funding. This is not a medical research program but there is a budget for the broad category of security and citizenship which includes public health. That category has a budget of about €2.7 billion a year (see table at the...

This seems broadly consistent the reportedly impaired systemic oxygen extraction, as well as with the propensity for ME/CFs patients to develop POTS (an illness of abnormal blood vessel regulation), the CPET abnormalities, and metabolic abnormalities. It's all still unclear but at least we have...

For your convenience

Moderator note: For further discussion of this research see this thread: fMRI cerebrovascular responses in CFS, Preliminary findings, 2019, Lara Mejia, VanElzakker et al. (Poster presentation)

Moderator note: This post has been copied from this thread: Brain inflammation

I'm going to let my fantasy run wild for a moment. We could get the EU to nominate a person in charge of "developing ME research", in recognition that the research situation is comparable to a cycle of poverty that is difficult to escape without financial stimulus. That person would be...

@Michiel Tack in the transcript you forgot the response to Evelien's final comments. I transcribed it. I think this is a promise of help. I believe they just can't decide there and then how the budget is going to be allocated. They need to discuss it at their "multiannual financial...

The review says that exercise therapy probably reduces fatigue at the end of treatment in comparison to a passive control. A passive control is inadequate and it's impossible to say how much of the difference between the treament and control groups is due to specific treatment effect as opposed...

Disappointing but I think we could all see this coming. Had they been serious, they would have withdrawn it without delay.

Okay. It's not a big deal. It's a good letter. I just thought it would be helpful to be specific and avoid possible misunderstanding of what is meant here.