I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates 27,000 parents’ reports on the effects of pharmaceutical and alternative interventions on autistic children. It’s not a clinical trial or a substitute for doctors’ advice. It uses subjective, self-reported measures (which we all know are problematic). It’s also a static snapshot. But for a long time I’ve been experimenting with treatments with much the same philosophy: which treatments are likely to be most effective with the lowest risk of harm?
I would love to try to assemble a similar report for the ME and CFS community. In order to create a survey that represents the most common treatments we have all tried, the first step is to gather a list of as many treatments as possible.
Click below to enter a list of the treatments you have tried. Thank you so much for your participation!
You’re Invited: The Beth Mazur Innovation Prize Fundraiser
November 1, 2024
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You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST. Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that
7 thoughts on “Take this preliminary survey on treatment benefits and harms”
Gabapentin – short term relief
Pregabalin- short term relief
Amatripalin – short term relief
Topiramate currently very effective
Quit caffeine – effective
Quit high sugar content food – effective
Quit processed food – effective
I have never been offered any treatment since 1987 except CBT which Barts decided I did not need as I was already exceeding the limits someone who is 85% disabled ( their prognosis) mighjt be expected to achieve. I tried Chinese Medicine which destroyed my already damaged kidneys. My renal consultant had encountered 3 such patients in 2003 who likewise had ME.
Its been 28 years of people shrugging their shoulders and the UK’s Department of Work and Pensions denying me the highest level of benefit award, as HM Government cannot accept the condition as physical and extremely debilitating. In fact my Member of Parliament (T Coffey) refuses to even accept that the condition is worthy of any of her time.
Very few treatments in 20 years.
Amitryptaline – ineffective – drowsy – unable to function.
Steroids for pain – excess emotions – ineffective .
Gabapentin -thought it was amazing – four days zero pain – then so dizzy couldn’t stand up. Tried again a few months later, same reaction. Ineffective.
Exercise 8 years ago – prescribed by doctor – disaster – I have never recovered to pre-exercise level. Ineffective.
Meditation – daily – effective. Calming.
Diet – gluten free – effective at reducing symptoms of bloating.
Diet – sugar free – no difference. Ineffective.
Pacing – effective at reducing major flares.
I was making an online service like this for my book’s website in 2008, but sadly the programmer pulled out of the project. The problem is that there are hundreds of viable treatments. Also, we’d need to know what treatment helps what, which is what my project was focusing on. For example, I suffer from chronic fever which few treatments have been able to touch, but I have no pain. So a treatment that only helps pain would not be useful for me at all, but treatments for fever are very useful. Some of the stuff that has helped me and people I know is pretty obscure stuff, that most people haven’t even heard of.
I have a list of the treatments I’ve tried on my website, with well over 100 entries, http://fiikus.net/?cfstreatment and http://fiikus.net/?cfssupplements though it’s missing about 20 of the newest ones due to lack of recent updates plus a few medications I’m not allowed to list because they’re pre-clinical trials.
And my book of course has over 250 treatments listed. http://www.brokenmarionettebook.com
My daughter has benefited by a low dose of beta blockers, low dose Naltrexone, Ritalin and Dr. Peter Rowe’s nerve gliding. CoQ10 as well.
Hi Jennifer. I think a survey is a good idea, but I don’t think you need to get our input in order to build the list. There are several comprehensive guides and lists of treatments. I would recommend the second edition of Erica Verrillo’s, CFS: A Treatment Guide, which was updated in 2012.
When I picked this up a couple month’s ago I was impressed to find that every treatement I have ever undertaken (beginning in 1983) is in this book, including several drugs I started in the past year that I thought to be “cutting edge.” They are all in there.
I HAVE BEEN TREATING “THIS” ILLNESS SINCE 1988.
AFTER A SEVERE VIRAL ONSET IN 1986.
SINCE THE “REGULAR DOCS” DID NOT HAVE ANYTHING .
I WENT THE “HOLISTIC” HEALTH ROUTE .
I CAN NOT BEGIN TO LIST ALL THE DIFFERENT APPROACHES.
INITIALLY IT WAS TO TEAR DOWN THE LAYERS OF “DYSFUNCTION” AND THEN BUILD UP THE BODY.
I WORKED WITH A CHIROPRACTOR, A NUTRIONAL MD , AND A NATUREOPATH .
THEY USED SUPPLEMENTS OF PERSCRIPTION QUALITY , VITAMINS, HERBAL REMEDIES ,
HOMEOPATHIC , THERAPEUTIC MASSAGES , IV’S , COLONICS .
I CAN NOT SAY ANYONE “ITEM” WORKED THE BEST ……
BUT IN WHOLE THE ” HOLISTIC ” APPROACH DID ME GOOD OVER THE YEARS.
IT WAS IN SPUTTERS , SOME IMPROVEMENT …THEN VIRAL RELAPSES .
IT WAS A COUPLE OF YEARS BEFORE I WAS “FUNCTIONAL ” …..
THEN I OPERATED ON A TIME PART BASIS ….WITH ALWAYS KEEPING IN MIND WHAT I HAD TO WORK WITH ON ANY GIVEN DAY .
I WAS COACHED TO ALWAYS KEEP SOME ENERGY “IN THE SAVINGS ACCOUNT ” AND NOT TO EXPEND ALL AT ONE TIME .
~2000
I WAS ON THE VERGE OF ATTEMPTING A “COMEBACK ” WHEN A SERIES OF FAMILY EVENTS HAD ME BECOME THE CARETAKER OF MY SISTER , AND THEN MY FATHER ( WHO DIED OF PANCREATIC CANCER
I BEGAN THE VOCATIONAL RETRAINING PROGRAM IN 2005 , WHEN”IRONICALLY” I WAS REAR ENDED
ON MY WAY FOR A PHYSICAL TO ENTER THE PROGRAM .
THE RESULTING INJURIES , HAS REQUIRED ME TO TOTALLY SWITCH MY MEDICAL CAR BACK TO
THE TRADITIONAL DR’S ……AND THE ME/ CFS SYMPTOMS HAVE BECOME PROBLEMATIC AGAIN.
THE RESULTING PHYSICAL INJURIES IN COMBO WITH THE “FIBRO” HAS NOT BEEN A GOOD MIX!!!
I CURRENTLY USE A VARIETY OF RX’S TO CONTROL MY SYMPTOMS FOR
– ANXIETY- PAXIL & -XANAX
– SLEEP – PAMELOR
– ALLERGIES – ANTIHISTAMINE , DECONGESTANT , NASAL SPRAY
– PAIN – TYLENOL
– AN ANTI-INFLAMATORY – CELEBREX
PLUS I HAVE A 2 -3x / WEEK “HOME THERAPY ” PROGRAM
– EPSOM SALT TUB SOAK
– GENTLE RANGE OF MOTION / STRETCHING / ASPERCREME MASSAGES.
I AM NOW IN MY MID 60’S …AND SENIOR HEALTH ISSUES ARE NOW INCLUDED ON TOP OF THE
ME/CFS ISSUES.
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