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I noticed that also. Many of the citations seem quite old. Though I think I saw NICE 2018 and a 2015 article by Crawley. (Not that those indicate anything of course. ;) Pardon my attitude.)

IF there were any basis to this rumor the researchers would have violated many ethical and scientific norms, as well as having questionable financial planning. In such a (theoretical) case we would do well to steer clear of those involved. However, these researchers have been forthcoming about...

August 2018 ME Caregiver Support Call Announcement Calls are open to caregivers (spouses, parents, siblings, partners, etc) of people with ME so that we can connect with, share with, and support each other. To accommodate people who have Saturday or weekend obligations we are going to host...

It's interesting you and others find cognitive symptoms resolve easier/quicker. That is definitely NOT the case in our household where it can take as long or longer to return to cognitive baseline than a return to physical baseline.

Is anyone else bothered by " He worked there for 16 years, analyzing thousands of tobacco control laws for a national database, until his chronic fatigue forced him to retire last summer."

Jennie Spotila has an important post on 2018 NIH funding. http://occupyme.net/2018/07/30/how-much-will-nih-spend-in-2018/

This article by Rowe discusses 3 of his patients with ME and cervical spinal stenosis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/ But who knows how widespread the issue is. I will also note that I know a few PwME with cervical spinal instability that from the looks of it (MRIs and...

@JenB - The attached may have some ideas for you. While this is not about policies per se, it is about what homebound/bedbound patients might find useful in terms of medical access.

I can't find the names of medical professionals or researchers associated with this. The title of the petition says it is PwME4ICC. All I can find is that this was started by Gabby Klein.

JULY call announcement ME Caregiver Support Call (July) Our next call will be on Saturday 28 July 2018. We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the next meeting to connect with, share with and support other caregivers. MEAction July...

Thank you Miriam Tucker!

@Starlight - I understand having waited a LONG time for even this much and wanting it to be better than it is. I am not sure where Faith Newton gets the 88% recovery rate for young people that she touts. (Possibly Crawley?) The big question for me with anything touting recovery is the...

@Webdog I hear you! I have been waiting and waiting for these pages... I am glad you think they are an improvement. :)

@Webdog - fwiw - the lag time between CDC developing (any) material and it being approved and posted is really lengthy so while it would have been nice to have more of the recommendations from the clinician summit, we'd be waiting a lot longer for that material..... We waited a long time for...

re ranks of reanalysis paper: As well it should be!

Update During our June call let’s talk about: Who are the most understanding people in your lives? and What is the most surprising/nicest thing someone has done for you (that takes you or your loved one) into account? MEAction Caregiver Support Call JUNE 2018 Saturday, 23 June 2018...

@dave30th - I can't thank you enough for this (and all that you do for us)!

@Trish - yes, the therapy involves stretching. My understanding is that for at least some patients general function (cognitive and physical) improves. The usual caveat applies -- larger sample size needed etc.

@adambeyoncelowe - Rowe is not a proponent of GET. The multimodal therapy he refers to begins with passive straight leg raises. At this stage the patient does not do the work. The physical therapist does. It is only when the patient can tolerate the physical therapist doing the straight leg...

June Caregivers Call Announcement Our next call is Saturday 23 June 2018 at 4pm (EDT) We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the next meeting to connect with, share with and support other caregivers. MEAction Caregiver Support...