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CDC updated its "Information for Health Professionals" page in its ME/CFS section on Dec 15. The page now offers links to the following documents: - IOM report (& the supplemental documents) - IACFSME Primer - 2016 Canadian guideline (draws heavily on both the IOM report and IACFSME Primer) -...

Actually, they have been well-funded. They have received several large grants for their work. So lack of funding doesn't explain the issues. https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/research I think there is the potential for harm, indirectly (though...

If it doesn't differentiate between ME/CFS and other illnesses, then it is merely a biological abnormality which they have found (of which we have many already, as you say) and not a test. If they put out press releases claiming to have identified an abnormality, that would be one thing, but...

I agree. As far as I'm aware, they've yet to do a study comparing ME/CFS with other illnesses (at least, there's nothing published, in any case. Whether they have something in the pipeline is another story). Until they can demonstrate adequate sensitivity and specificity, they are far from...

I don't have a question, just wanted to thank all those involved in organising these Q&A/AMA sessions. They're so useful for the community, and no doubt use a lot of precious energy. Thank you all! :thumbup:

Thanks, Graham. Yes, I have that one :)

I've just skim read the Baseline/Covariate Information Materials: https://www.commondataelements.ninds.nih.gov/Doc/MECFS/02_Baseline_Covariate_Subgroup_CDE_Draft_Recommendations.pdf The working group which developed it includes some well known ME/CFS experts: Anthony Komaroff, Jose Montoya...

Fantastic letter, @Carly Maryhew! Thank you for using your precious energy to write it!

Thanks, @Cheshire! :)

Hi brains trust! I'm looking for surveys in which patients have ranked treatments they've tried (from beneficial to harmful). I've got the ME Association's 2010 survey ("Managing my ME"). Are there others? Help! TIA :)

This was not news I had anticipated waking up to! I feel so deflated. :( I am so grateful to Fluge & Mella for their dedication to good science, and the work they have already to contributed to this field. I'm also feeling despondent. I think many of us have been holding our breath for the...

We have yet to find out if this is an official policy, but we are collecting case studies of claims which have been rejected. The issue is that the Disability Support Pension requires people to demonstrate that their condition is fully treated and stabilised. If an individual hasn't done...

I live in Melbourne, which is where the research for the FODMAPs diet was developed. There is at least one low FODMAP cafe, a couple which cater to low FODMAPs and a home delivery service.

The low FODMAPs diet has made a huge difference to my IBS symptoms. I used to eat gluten-free, but don't bother anymore. Reducing the FOMDAPs has meant I can tolerate a bit of gluten here and there. I've been on it for a few years now, and am only just reintroducing foods, very slowly. I know...

I was thinking the exact same thing. There've been some articles which don't mention it, and it's like a breath of fresh air. Finally! Hopefully the trickle will soon become a flood.

KPAX-002 is the Synergy trial (methylphenidate plus proprietary mitochondrial support), so named because they noticed that methylphenidate and mito support each yielded modest improvements (though obviously not in everyone), and they wanted to see if there was a synergy if using them together...

CBT has long been controversial within psychology. Researchers like it, because it lends itself to being studied. Professional associations like it, because it provides a medical model of psychology (identify problem, provide treatment at prescribed dose (X sessions of CBT), resolve problem)...

This is definitely an improvement, but it is definitely a mixed bag in its attempts to appease the psychosocial school. It is good that it mentions CBT, but only as an aid to coping (as it is used with other chronic illnesses), not the PACE- style approach to address our supposed "false illness...