It’s been quite a month on the HR Forums. My experience with Forums is that at some point they just catch on. That happened last month on the HR Forums with the number of posts zinging up 6 times their previous record and pageviews booming up 50%.
If you’ve checked out the Health Rising Forums please check them out again and if you haven’t – check out the only ME/CFS/FM Forums with Recovery Stories, Doctor Reviews, Resource and Media sections.
We’ve also recently added the ability to see the Forums in a long form and short form formats (see Switch to Compact/Detailed Format button) and will be adding a newly designed Forum package in soon.
You can find the Health Rising ME/CFS and FM Forums here.
One Warning – some past or present Phoenix Rising Forum members have reported being banned, being put under moderation and/or having their private messaging abilities cut off after they said/ raised some issues about the way the PR forums are run on Health Rising. If you plan to participate on that or other threads please consider using a different user name on the Health Rising Forums.
New on the Health Rising Forums
Threads
- The BIG Diabetes Insipidus thread – One Forum member found that he was peeing like a race horse….It turned out he wasn’t the only one…
- Sinus Problems and What to Do About Them
- What Antioxidants Do You Use?
- What to Pack in an Overnight Bag to Go to the Hospital (or anywhere else).
- James Coyne on the Limits of Empathy
- Rituximab, Lupus and Chronic Fatigue Syndrome
- Kombucha – It’s Working!
Polls
- PEM vs Crashing vs Relapsing – which you do you experience?
- What kind of doctor gave you your diagnosis – and how is it going now?
- Have you ever been accused of faking it?
- Should I or Shouldn’t I? The Chronic Illness Dilemma Poll
Some Oldie But Goody Polls
- Would You Take an Experimental Drug For ME/CFS and/or FM?
- Do You Have Progressive Chronic Fatigue Syndrome (ME/CFS)?
- Sex, Chronic Fatigue Syndrome and Fibromyalgia: the Sex Poll
Recovery Stories
- Gene Analysis Gives ME/CFS Patient Clues to Recovery
- Ketamine gives Stephanie a chance at a life
- Vagus Nerve Stimulation Turns Jean’s Life Around
Resources
- Potential Microglial Inhibitors
- Turbocharging Tumeric
- Gut Fermentation Syndrome – One Patients Experience
- How to Get Supplements Cheap By Buying Them in Bulk
Video’s
Two New Video Sections Added
- The Vagus Nerve and Vagus Nerve Stimulation – Dr. Natelson said he was blown away by the results of his and Dr. Lange’s vagus nerve stimulation study in fibromyalgia. As he begins a new trial (reportedly in the next couple of months) find out what the vagus nerve is and does, how to enhance vagus nerve activity with surgically implanted and external vagus nerve stimulators and/or mind/body/breathing techniques.
- Ketamine – has been a wonder drug for some with severe pain and/or depression. Clinical trials are underway to bring new Ketamine drugs to market. Learn more about a powerful drug that may be coming to your doctor’s office in the not too distant future.
Hi
There appear to be several broken links above?
Yes, indeed. I don’t know how that happened but I think they have all been fixed. Thanks for letting me know.
Thank you, this is something to really celebrate. I am always ranting 1500 participants is a cross section of the true representation of the population. With a 100,000 of us, we have a great opportunity to represent data to Big Phara, NIH, and Researchers of who we really are. This site is not only powerful in supplying us information, but for us given maybe the right questionnaire personal dairies to keep, with concise information for us to have a voice of information to them. That’s me always lobbying and maybe dear Cort we could see if there was a little grant money lying around somewhere just for information,maybe getting volunteers to do daily “snapshot dairies” both CFS/ME and FM our goal being 1500 each. We need know controls, because these are case studies. Just the bare history facts. Written in picture words by measurable levels. We have 100,000. Sounds like fun. We after all are the experts.
I think I understand what your saying – personal histories or daily diaries to be used by researchers? I SO agree with this. One thing I notice talking to people with conditions that manifest with similar symptoms – pain, fatigue, depression, etc… ie FM, ME/CFS, Lyme, Thyroid disorder …. Is that they can be so easily misdiagnosed because they have similar symptoms. What I’ve found though is that the quality of those is different – the pain is different, the fatigue is different – example – an article here talked about MS vs ME/CFS and post-exertional malaise – present in CFS, not in MS. I think if these similar conditions could be understood more descriptively with “word picture” as you said, maybe that would help doctors diagnose more accurately and researchers dilineate the “why” someday….
Exactly, Mata, and I am also saying these researchers don’t actually prove anything consistent and CONCRETE about our different medical populations because they don’t have a big enough cross section of our population numbers. I worked with Grant programs all my professional life and they want numbers BIG numbers to prove your hypothesis. My hypothesis was you approach “You approach families from the concept of drawing on and reinforcing their strengths and allowing them to bring up whatever need they want to address and then lead them in solving the need, families are more likely to be successful” I used a benign approach of play learning with families of infants through 4. I was given $250,000 for a start up for 5 years. Sounds like a lot, not when you buy office supplies, learning toys to lend through a toy library, and standard measuring tools you can use that are non intrusive but objective, and a formula for case studies written correctly your greatest asset. But a gold standard of “proof” amongst clinicians is 1500 for a true “snapshot” of the population.
That’s why if I had to prove my little hypothesis that would only possibly get social workers and family support workers take a different approach in dealing with families. And I fell short due to my illness, because I would have gotten my grant extended. I was 88% successful with 700, but it was the gold standard of proof.
But here with 100,000 members if everyone as you said could write a word picture of there day. They could be broken do into subcultures, as years with symptoms, starting events, etc. Because when researchers approach me they want to “finite” me for me to prove their hypothesis. Maybe it’s the Doctor GOD complex thing, but I got news for them. Fit all of us in their hypothesis isn’t doing shot for us. All just because they got 25 of together at one time and we drank hot chocolate and felt happy afterwards doesn’t mean hot chocolate cures depression in CFS/ME and Fibromyalgia, because the other 1475 May have gotten a rash.
I really would love to see if there are so diaries already out there that are comprehensive enough so we don’t have to reinvent the wheel. And get our Case studies together. If nothing else, have them published for some atrocious medical book cost, just for Dumb Ass to see what a real Population looks like. Then donate the money to help those of us who are in most need.