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As I have said, I accept that some people don't have the money to donate to research. However only a tiny fraction of people affected donate so I think there are plenty of people who could donate something but don't.

Most studies in the US seem to give some sort of payment. There may be a different culture there. For example, a lot of people get paid to donate blood there.

Eur J Pain. 2016 Oct;20(9):1502-12. doi: 10.1002/ejp.874. Epub 2016 Apr 18. Increased pain and muscle glutamate concentration after single ingestion of monosodium glutamate by myofascial temporomandibular disorders patients. Shimada A1,2, Castrillon EE3,4, Baad-Hansen L3,4, Ghafouri B5, Gerdle...

Imipramine versus placebo for multiple functional somatic syndromes (STreSS-3): a double-blind, randomised study. https://www.ncbi.nlm.nih.gov/pubmed/28408193 Abstract BACKGROUND: Functional somatic syndromes, including chronic fatigue syndrome or irritable bowel syndrome, often co-exist...

I don't want to edit much messages people have liked so thought I would write this here as I want to highlight that I don't expect everyone to be able to donate or fundraise. Some people can be in difficult financial circumstances, I know and accept that. I have just found it interesting to...

Just following on from my earlier posts, I think the lack of hard science could influence how people who have improved see things. I speculate that some people who have improved don't donate or fund-raise as they see the illness as treatable, other people just need to do whatever it is they have...

If they are very sick with the illness all the more reason to donate to the cause. Some could be too poor alright. Edited to add: Though others were married and didn't seem to be particularly poor. Some would sometimes get in touch again after they had a setback.

I have sent maybe eight thousand letters on behalf of an ME/CFS group to former enquirers to the group including people who attended meetings plus some lapsed members. Most of these letters were sent 10+ years ago when few people would have been donating to groups in other countries particularly...

A potential problem is people might not have all the diagnoses they should have. I was diagnosed first with IBS. I had ME/CFS at that stage but not the diagnosis. Also the definition of Fibromyalgia has widened with the 2010 criteria which don't require a tender point evaluation. A lot of...

Now:

via https://cfsme-registry.info

Thanks to everyone who have made this such a great forum its

Study by Brian A. Fallon Clin Infect Dis. 2014 Dec 15;59(12):1705-10. doi: 10.1093/cid/ciu703. Epub 2014 Sep 2. A comparison of lyme disease serologic test results from 4 laboratories in patients with persistent symptoms after antibiotic treatment. Fallon BA1, Pavlicova M2, Coffino SW3...

I hope the Lyme (and related)-community starts focusing more on donating/fund-raising for research. It should move the field on. I have rarely seen talk about fund-raising events for research or even calls to donate to research (though I only dip in and out of fora).

The A level issue would likely affect both arms of the trial to a similar extent. They could also have reported sensitivity analyses where the data was looked in different ways e.g. excluding those doing A levels.

http://tidsskriftet.no/en/2017/12/debatt/tenuous-link-between-chronic-fatigue-syndrome-and-pyruvate-dehydrogenase-deficiency/kommentarer Chronic fatigue syndrome and pyruvate dehydrogenase function 13.12.2017 Karl Johan Tronstad, Øystein Fluge, Olav Mella We appreciate the comments, but...

Aside: I hadn't seen "goulash" used in this way before so I googled "goulash meaning". Didn't like the second entry I saw [urban dictionary]!