Search results

I wasn’t able to read all the comments, but on the subject of whether cbt is useful in treating any psychiatric illness, I would argue yes for OCD and possibly for major depression. It doesn’t make the illness go away, but does give people tools to manage symptoms. In the case of OCD, a...

I am glad for anyone who is experiencing symptom improvement as a result of taking abilify. I do have a couple of concerns though. I have read many comments that suggest that the dose being used for me/cfs is uniquely low and side effects will only occur at high doses. Actually low dose...

Not a dunce head question at all. It was posted in a fb group. I couldn’t work out the origin myself. @5vforest seems to have worked it out above.

Exactly. They sound like more false hope and false promises.

(Edited to manage visual impact of white text on black screen) Facebook: paused_me Saturday Kristina Starostina to Whitney Dafoe Hello Whitney, can you then say, how long do we have to wait till something breaking comes out? Approximately... This year, 2 years, 5 years? I would like to...

I agree. I am particularly bothered by Whitney’s comments that he has inside information, can’t reveal it all, but knows that big things are right around the corner, and everyone should therefore have hope. I understand his motivation may be to give hope to others with ME, which is nice...

Even if that’s true, their strategy backfired in the case of my donations and those of my family. I chose not to financially support OMF due to their messages of false hope, the disappointing response I received when I wrote them regarding those messages, and their actions related to CCI. I...

Since Whitney announced improvements from abilify I have seen more and more inquiries about it. The attention given to treatment responses of high profile people concerns me. I understand the urgency to get better and the urge to try what’s available. However, what I have heard from...

Which link?

At the other forum, there is another update from Mattie. He discusses possibility that improvements he experienced may have been a placebo response to surgery.

I wish it’d be set up like a go fund me campaign so we could choose what research we’d like to support. On this subject: I am interested in which ME organizations other patients are choosing to financially support and what factors led them to choose the organization(s) they did. I would like...

Just read that Naviaux agrees that CCI fits with his cell danger response theory and plans to meet with Dr Kaufman in 2 weeks to discuss intersection of mecfs, CCI and cell danger. This was reported on a me Facebook group and attributed to Naviaux’ clinical study coordinator. Can someone who...

Speaking at the community symposium at Stanford today Ron Davis mentioned a possible cause of collagen degradation in me/cfs. It went by too fast for me to keep up. I’m waiting for the video to be posted so I can watch it again. I read somebody else’s notes on the talk which stated that...

So just to clarify do you mean that virus would not or could not affect the connective tissue in the neck either ?

If I understand correctly the argument being made is that a virus is causing me and cci by causing damage to the connective tissue. My question with that argument is why the connective tissue in the rest of the body isn’t damaged? I know there’s a lot of skepticism about hEDS, but I have that...

Question about symptoms. Is numbness of the face an uncontested symptom of either CCI or ME/CFS? Also any opinion on the list of symptoms for CCI listed on the MEpedia page. Thank you. @JonathanEdwards

Yes headphones and ear buds of all kinds bother or irritate or hurt me. I just ordered the soft headband style to try out. I don’t think this is a common problem for people from though from what I observe. I’ve always had trouble with ear buds and ear plugs not fitting correctly in my...

Yes, well I am just saying that when I did a google search for CCI symptoms POTS issues were mentioned on several sites. I was confused initially also, because I didn't recall they were related. I just went back to search now to see exactly what the wording was. The pain relief foundation...

@Jonathan Edwards What do you think the story points to? I am concerned that people are starting to think POTS is a sign of CCI, and if you search for CCI symptoms, POTS and OI are listed, but I note that they were not on your list of most important physical signs of CCI.

Yes, but that’s not the message that’s getting “out there” to people too sick to research and/or without science background. I read a comment recently on a Facebook mecfs group in response to someone having POTS-like symptoms, which said ‘if you are diagnosed with POTS check to see if you have...