Search found 25 matches

Search found 25 matches
by Valentijn
Sat Aug 17, 2013 11:17 am
Forum: research & funding
Topic: GET or Pacing?
Replies: 4
Views: 6214

Re: GET or Pacing?

Thank you so much for your information and efforts, Dr Shepherd. It's very helpful and reassuring to see some of the actual data and to know that we're not alone in failing to improve with GET. Something I've found extra perplexing lately, here and elsewhere, is that GET used to be pretty clearly ab...
by Valentijn
Sat Aug 17, 2013 10:48 am
Forum: research & funding
Topic: Where is the evidence that CBT/GET increase activity levels?
Replies: 1
Views: 3076

Re: Where is the evidence that CBT/GET increase activity lev

I asked this too in another thread that I think is locked now, without any response to it. Since some experts here have said repeatedly that GET increases activity levels, is there any research that supports that claim? The only studies I've seen about GET say that patients often report less fatigue...
by Valentijn
Sat Aug 17, 2013 10:28 am
Forum: research & funding
Topic: For Jessica Bavinton
Replies: 6
Views: 8160

Re: For Jessica Bavinton

I can see why threads get closed after the question is thoroughly answered, but in many cases the answer seems to include incorrect assumptions or unasked questions. In that case, it seems important that additional information can be provided by the person asking the question, or that followup quest...
by Valentijn
Fri Aug 16, 2013 5:17 pm
Forum: physical activity & exercise
Topic: GET not working
Replies: 1
Views: 2742

GET not working

I'd asked a question on another thread but then it got locked down after getting a response, so I couldn't respond to it. Maybe because someone else started the thread? But I'd really like to know why things aren't working for me. Here was the post I made and the response: Re: Old patient harmed by ...
by Valentijn
Fri Aug 16, 2013 3:26 pm
Forum: adult medical
Topic: Strange Symptoms
Replies: 5
Views: 2870

Re: Strange Symptoms

Weird, I had the right-sided numbness too, a few years before I go sick. Eventually everything was ruled out, and a neurologist suggested folate supplementation which made it go away shortly after. The episode lasted 3 weeks, and was labeled as a complicated right-sided hemiplegic migraine, basicall...
by Valentijn
Fri Aug 16, 2013 3:19 pm
Forum: adult medical
Topic: cfs
Replies: 2
Views: 958

Re: cfs

I get some similar symptoms, from orthostatic intolerance. My blood pressure and pulse pressure can drop after being upright (even just sitting up) after a while, but then I feel better after laying down for a while.

Maybe this is the same thing?
by Valentijn
Fri Aug 16, 2013 2:54 pm
Forum: paediatric medical
Topic: re immunisations
Replies: 5
Views: 4695

Re: re immunisations

A couple studies were done regarding flu vaccinations in ME/CFS patients, and they found that the patients had abnormal immune and other reactions to the vaccinations, though the vaccinations also seemed to provide protection appropriately to the ME/CFS patients. Are the abnormal side-effects of ME/...
by Valentijn
Fri Aug 16, 2013 2:38 pm
Forum: paediatric medical
Topic: Air Hunger
Replies: 10
Views: 8607

Re: Air Hunger

I had the feeling that my lungs weren't expanding properly one night while drifting off to sleep. I tried to lay down in different positions (I can't breathe properly on my right side or my back) for about an hour or so, but it wouldn't go away and I just kept feeling worse and worse, even while try...
by Valentijn
Fri Aug 16, 2013 2:28 pm
Forum: paediatric medical
Topic: Body 'shut down'
Replies: 7
Views: 7664

Re: Body 'shut down'

From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support.. I'm confused - how does psychological support help with convulsions and...
by Valentijn
Fri Aug 16, 2013 2:22 pm
Forum: activity management in children
Topic: Cognitive impairment
Replies: 8
Views: 5619

Re: Cognitive impairment

Something a lot of people (even adults) have trouble pinning down as a symptom is orthostatic intolerance. Studies have shown that a lot of ME/CFS patients have it, often resulting in low blood pressure and/or pulse pressure after being upright for too long. Doctors can diagnose it and treat it, but...
Search found 25 matches