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Found this to be an interesting story. A Scottish women named Joy Milne says she can smell Parkinson's. She is a former nurse and her husband developed the illness. Milne says she noticed the smell of Parkinson's ten years before her husband was diagnosed with the illness. After going to a...

Thanks to @Robert 1973, @JohnTheJack, @Graham and @Esther12 for mentoring me and helping me write the letter. Very much appreciated.

I'm now going to tag some smart people, in the hope that others take it over from here (apologies to all the smart people I forgot, it's a long list). @wigglethemouse @strategist @Hutan @Trish @Andy @Graham @Robert 1973 @JohnTheJack @Adrian @Woolie @Snow Leopard @Dolphin @Esther12 @Barry...

I've focused on the above four proposals because I thought these would be generally accepted by most. But that's also a weakness: much of this is probably known at the NIH or will be addressed by other stakeholders as well. The NIH also asks about ways to identify "potential approaches to...

4) Clinicians with expertise in ME/CFS The diagnosis of ME/CFS requires specific expertise. Studies have shown that approximately 40% of patients expected to have ME/CFS in primary care have other conditions after examination in a specialist center. [1-4] Because there is no biomarker for...

3) Robust findings: replication, larger samples, and better controls In 2015, a review report by the National Academy of Medicine identified more than 9000 scientific publications on ME/CFS. [1] Few of these, however, have produced robust findings. With the exception of psychosocial research...

2) Case definitions of ME/CFS should require the presence of post-exertional malaise Post-exertional malaise (PEM) or a marked symptom exacerbation after minimal exertion is considered to be the hallmark symptom of ME/CFS and should therefore be a mandatory requirement in diagnostic criteria for...

1) RFA’s to break the cycle of inertia Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has an estimated prevalence of 0,2% [1] to 0,4% [2], meaning it is more common than multiple sclerosis, AIDS or systemic lupus erythematosus. Patients with ME/CFS have been found to be more...

I have worked out the four proposals I listed in an earlier post. These are the suggestions that came up to me. I hope it will only be a starting point and that others add proposals to it. Hope that somebody will also fact check what I wrote. I focus mostly on the bad, BPS-research and am not...

Not really, I prefer that the diagnosis of ME/CFS is made by a specialist centre or expert clinicians, not by GP's. But they are the ones following up on ME/CFS patients, so they need to know what PEM is and that fatigue in ME/CFS is not just sleepiness and tiredness etc. I mainly want the...

I'm not against the F-word but there are other ways to describe it: disability, exhaustion, flu-like feeling. It would be good if the NICE guideline provided a little more context here. For example how patients dislike the term fatigue to describe their symptom and how they experience something...

I suspect lots of it is going to be similar to the ME/CFS guideline. It will probably provide information on conditions that doctors should consider and exclude as these might be a cause of long-lasting fatigue such as sleep apnea, atypical depression, anemia, EBV. It might also provide...

I agree with this actually. My letter ended as follows: Flatt et al. [1] rightly highlight the debilitating nature of chronic fatigue, which has been overlooked by the clinical and scientific community. The confusion between ME/CFS and idiopathic chronic fatigue might have played a decisive...

In Belgium there is a guideline for doctors that focuses on unexplained fatigue. It was written by the Finish company Duodecim that provides brochures of evidence-based medical information. Perhaps other countries use this information as well. ME/CFS is shortly mentioned as a sub-category, a...

Bit confused and not sure what argument you're raising here. With statements like these you seem to suggest that there is no need for a separate NICE guideline on ME/CFS and that it would be better to have one for all patients with chronic fatigue where no organic disease process can be found...

Right, but if we keep defining ME/CFS in terms of unexplained chronic fatigue (which has a prevalence that is much larger than that of ME/CFS) then doctors will be asking that questions on occasions when it is not appropriate. I thought the intent of the NICE guideline was to provide doctors...

Great @Robert 1973! Particularly liked this quote: It says so much about this disease with very few words. I hope that Dr Porter will read it.

I don't think Sharpe is saying this to Francis Ryan. In fact, I think he is just showing his twitter followers that she may be uninformed on the subject.

It says: So that would be 2.825 million per year. That seems like a lot for advocacy organizations. Is the 15 million figure also for a 4-year period?

The Vox-article lists alternatives such as concentrating on effect sizes or confidence intervals or simply lowering the significance for p values to 0.005 instead of 0.05, as suggested by a group of scientists in 2016. I think I'm in favor of the latter. At least in the field of ME/CFS...