Things are soo…scattered on the web. The How To Project aims to make it easier for FM and ME/CFS patients to quickly find out or get guidance on how to do things related to ME/CFS/FM….
Suggestions are welcome about "how to" proceed and what how to's to include
as well as links to them if you have them.
I'll have a proviso that many of the how-to's are created by patients.
Here's what I have so far:
Treatments
Find cheap ways to get supplements
Find cheap ways to get drugs
Get treated for viruses
Determine the right kind of magnesium to take
Track how your treatments are doing - Any Treatment / Patients Like Me
Take cannabis safely
Make cannabis oil
Find out how others are doing on treatments
Find a study to enroll in
Get on an ME/CFS patient registry
Find stories of people who have recovered from chronic fatigue syndrome or fibromyalgia
Diagnosis and Testing
Determine if you have ME/CFS
Determine if you have fibromyalgia
Determine if you have postural orthostatic intolerance syndrome (POTS)
Determine if you have IBS
Determine if you have Ehler's Danlos Syndrome
Determine if you have Sjogren's Syndrome
Determine if you have sleep apnea or restless leg syndrome
Determine if you have mast cell activation syndrome (MCAS)
Determine if you may have a central brain injury
Find out what symptoms are present in ME/CFS and FM
How to find diseases that mimic ME/CFS or FM
Find out how your genetic makeup may make contribute to disease
Find out and interpret your MTHFR status
Get tested for viruses
Not miss out on valuable tests for ME/CFS
Get medical tests done without a doctor's prescription
Gut
Eat raw food again
Increase your probiotic intake with fermented products
Make sauerkraut, kimchi, pickles and other products
Make kefir
Make kombucha
Do a gluten free diet
Do an elimination diet
Do a low glycemic diet
Do a paleo diet
Sleep
Find a sleep drug
Prop up the head of your bed up to help your sleep
Create a good sleep environment
Find suggestions for sleep drugs
Find suggestions for sleep supplements
Determine if you have sleep apnea or restless leg syndrome
Track your snoring/breathing patterns
Do a sleep study
Tracking and Disease Management
Monitor the effects of treatments and exercise
Track your activity levels
Advocacy
Tell your story
Convince others that ME/CFS and FM are serious diseases
Become an advocate for ME/CFS
Become an advocate for FM
Find out how much the NIH is spending on chronic fatigue syndrome
Support ME/CFS research
Support fibromyalgia research
Management
To exercise properly
Determine your maximal heart rate
Do yoga safely and effectively with ME/CFS and FM
To pace yourself and experience more energy and less pain and fatigue
Reduce stress in your life
Cope with a chronic illness - Toni Bernhardt's books
Learning
Keep up with the latest information on ME/CFS Research and Treatments - HR and other blogs
Social
Find a chat group -
https://www.facebook.com/groups/hunterhopkinscentermecfsfmprivatechatroom/
Disability
Apply for disability
Get an exercise test done for disability
Health Rising
Volunteer for Health Rising
Write a blog for Health Rising
Support Health Rising
Get Health Rising's free blog
_____________________
Find someone to drive you to a doctors appointment
Suggestions are welcome about "how to" proceed and what how to's to include
as well as links to them if you have them.
I'll have a proviso that many of the how-to's are created by patients.
Here's what I have so far:
Treatments
Find cheap ways to get supplements
Find cheap ways to get drugs
Get treated for viruses
Determine the right kind of magnesium to take
Track how your treatments are doing - Any Treatment / Patients Like Me
Take cannabis safely
Make cannabis oil
Find out how others are doing on treatments
Find a study to enroll in
Get on an ME/CFS patient registry
Find stories of people who have recovered from chronic fatigue syndrome or fibromyalgia
Diagnosis and Testing
Determine if you have ME/CFS
Determine if you have fibromyalgia
Determine if you have postural orthostatic intolerance syndrome (POTS)
Determine if you have IBS
Determine if you have Ehler's Danlos Syndrome
Determine if you have Sjogren's Syndrome
Determine if you have sleep apnea or restless leg syndrome
Determine if you have mast cell activation syndrome (MCAS)
Determine if you may have a central brain injury
Find out what symptoms are present in ME/CFS and FM
How to find diseases that mimic ME/CFS or FM
Find out how your genetic makeup may make contribute to disease
Find out and interpret your MTHFR status
Get tested for viruses
Not miss out on valuable tests for ME/CFS
Get medical tests done without a doctor's prescription
Gut
Eat raw food again
Increase your probiotic intake with fermented products
Make sauerkraut, kimchi, pickles and other products
Make kefir
Make kombucha
Do a gluten free diet
Do an elimination diet
Do a low glycemic diet
Do a paleo diet
Sleep
Find a sleep drug
Prop up the head of your bed up to help your sleep
Create a good sleep environment
Find suggestions for sleep drugs
Find suggestions for sleep supplements
Determine if you have sleep apnea or restless leg syndrome
Track your snoring/breathing patterns
Do a sleep study
Tracking and Disease Management
Monitor the effects of treatments and exercise
Track your activity levels
Advocacy
Tell your story
Convince others that ME/CFS and FM are serious diseases
Become an advocate for ME/CFS
Become an advocate for FM
Find out how much the NIH is spending on chronic fatigue syndrome
Support ME/CFS research
Support fibromyalgia research
Management
To exercise properly
Determine your maximal heart rate
Do yoga safely and effectively with ME/CFS and FM
To pace yourself and experience more energy and less pain and fatigue
Reduce stress in your life
Cope with a chronic illness - Toni Bernhardt's books
Learning
Keep up with the latest information on ME/CFS Research and Treatments - HR and other blogs
Social
Find a chat group -
https://www.facebook.com/groups/hunterhopkinscentermecfsfmprivatechatroom/
Disability
Apply for disability
Get an exercise test done for disability
Health Rising
Volunteer for Health Rising
Write a blog for Health Rising
Support Health Rising
Get Health Rising's free blog
_____________________
Find someone to drive you to a doctors appointment