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A lot of researchers do. This is from a quick search of abstracts on pubmed. Nacul et al. https://www.ncbi.nlm.nih.gov/pubmed/30974900 Fluge et al. https://www.ncbi.nlm.nih.gov/pubmed/30934066 Kerr. https://www.ncbi.nlm.nih.gov/pubmed/30918887 Chu & Montoya...

The relevant section seems to be: Well done Mr Peters! Those Judges all seem to fancy you:

Now that I think of it AIDS - acquired immune deficiency syndrome - is probably another example. We still use the term syndrome even though we know about the HIV virus. So disease might be a more suitable term. I think few people will think of this as a problem or that the name AIDS should be...

Yes, that is actually one of the reasons why I'm asking. In Belgium CFS experts often say that you can't use the word 'ziekte' for ME/CFS, that it is a syndrome ('syndroom') instead. In English, it might not be much of a problem to avoid the term 'disease' because you still have the term...

I apologize in advance for opening the discussion about whether we can call ME/CFS a disease or not. This topic is discussed sporadically in other threads and I thought it might be useful to make one for it, to collect our thoughts about it in a more structured manner. This subject may seem...

The same is true in Belgium. It makes it difficult to change things. The only option we see is to plead for better education on ME/CFS for the doctors making the disability assessment.

Can any researcher receive funding with the Solve ME/CFS initiative, say for example a research team from Belgium? How does that normally work - do researchers have to apply and submit a proposal, do they have to contact someone at Solve ME/CFS Initiative or is it someone at Solve ME/CFS...

2 days to go and we're at 97%. If this was a bicycle race, this would be a pretty amazing finish.

That sounds like a great idea.

Thanks for sharing your thoughts and experiences @Goblinf !

In Belgium, we also have general elections next month. I thought about doing something similar with template letters, but then I wondered whether this is the right time to try and influence politicians. In the days before the elections, most politicians are extremely busy and focused on the...

In a way, this is quite an interesting study because they had a lot of data on a lot of patients over a long period of time. They measured outcomes at baseline, after CBT-treatment, and at long-term follow-up. What is remarkable to me is how many factors were not predictive of fatigue and...

Many thanks to ME Action for working out a detailed submission. Just two remarks: Only the response to the first question is written in full sentences and paragraphs. The other responses are mostly short highlights, many which repeat points that were made in the response to the first question...

Quite a remarkable paper for a peer-reviewed scientific journal. I think this will be useful for ME advocates as it explains some of the issues without window-dressing. Here are some interesting quotes:

I think ME Action just offers to be a platform for these essays. So I don't think it should necessarily be seen as a strategy by them. Lack of representation and underdiagnosis of minority groups is probably a big issue in the US, so I think it's normal that this is highlighted. Jenkins does a...

Could you briefly explain the situation in Sweden: how many patient organizations are there? Do they report on Tullers activities? I'm trying to understand why so much more people from Sweden and Noway are willing to donate compared to Belgium and The Netherlands... By the way: Erica Verilla...

In 2003 there was an International Chronic Fatigue Syndrome Study Group that specified how the Fukuda-case definition should be operationalized. I think this is what they are referring to. See: https://bmchealthservres.biomedcentral.com/track/pdf/10.1186/1472-6963-3-25

A comment to this article by Frank Twisk has been published: "Letter to the Editor: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Definitions, Similarities, and Differences."

I don't know if the figures of patients with a mental health diagnosis such as depression or anxiety are higher, using the Oxford criteria than with other criteria. At the time the Holmes criteria were used I think 50-75% of CFS patients had such a comorbid diagnosis.

Yeah, that's how they present the theory nowadays. But my point is that this version of their theory doesn't make sense without these illness beliefs leading to deconditioning as was originally proposed.