The Health Rising "How To" Project for ME/CFS and FM

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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
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Find someone to drive you to a doctors appointment
 

GG

Well-Known Member
I'm wondering if I could be a specimen of that NIH testing that is likely to happen. Seems my problem is I live all the way up here in NH. The studies happen where? Maryland?

I think I would be good for a study, because I have done the CPET testing 2010, so would like to repeat that, and see if things have changed? I can more active than lots on this site/community, but I still suffer a lot.

I've also been in 3 or 4 studies in the Boston area.

GG
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm wondering if I could be a specimen of that NIH testing that is likely to happen. Seems my problem is I live all the way up here in NH. The studies happen where? Maryland?

I think I would be good for a study, because I have done the CPET testing 2010, so would like to repeat that, and see if things have changed? I can more active than lots on this site/community, but I still suffer a lot.

I've also been in 3 or 4 studies in the Boston area.

GG
I think you'll probably have to be a patient with one of the ME/CFS experts. I do believe a few patients may come from outside the experts but am not sure how they will find them. Maybe use the contact form?
 

tandrsc

Well-Known Member
1. Under diets, I'd like to add how to be vegan. I have a general guide that makes it very easy (but it took me a while to find out). Namely:
Eat pulses/beans every day
Eat whole grains every day
Eat nuts and/or seeds every day
Eat at least 7 different fruit and veg every day
Eat a source of iodine every day, such as nori sprinkle or iodised salt
Take a B12 supplement (it's unlikely there's enough in a vegan diet)

A couple of sites with nice recipes are:
http://www.forksoverknives.com/recipes/
http://ohsheglows.com/categories/recipes-2/

2. Under supplements, I'd like to add how to take them transdermally. Some will absorb through the skin so tablets can be crushed and added to cream (I do this with zinc and vitamin D). A bath with epsom salts will also get some magnesium into you.

This would be very helpful for those of us who just don't seem to absorb tablets well and/or hate taking them.

3. Under management, I'd like to add relaxation techniques. This is my personal favourite - http://forums.phoenixrising.me/index.php?threads/relaxation-technique-not-based-on-breathing.19928/

4. Under treatment, I'd like to add how to do vagus nerve stimulation with a TENS machine - you already have a resource on this - http://www.healthrising.org/forums/threads/preparing-tens-leads-to-use-in-vagus-nerve-stimulation-of-ear.2653/

@Cort - I forgot to say that I think a "How to" section is an excellent idea.
 
Last edited:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Great
1. Under diets, I'd like to add how to be vegan. I have a general guide that makes it very easy (but it took me a while to find out). Namely:
Eat pulses/beans every day
Eat whole grains every day
Eat nuts and/or seeds every day
Eat at least 7 different fruit and veg every day
Eat a source of iodine every day, such as nori sprinkle or iodised salt
Take a B12 supplement (it's unlikely there's enough in a vegan diet)

A couple of sites with nice recipes are:
http://www.forksoverknives.com/recipes/
http://ohsheglows.com/categories/recipes-2/

2. Under supplements, I'd like to add how to take them transdermally. Some will absorb through the skin so tablets can be crushed and added to cream (I do this with zinc and vitamin D). A bath with epsom salts will also get some magnesium into you.

This would be very helpful for those of us who just don't seem to absorb tablets well and/or hate taking them.

3. Under management, I'd like to add relaxation techniques. This is my personal favourite - http://forums.phoenixrising.me/index.php?threads/relaxation-technique-not-based-on-breathing.19928/

4. Under treatment, I'd like to add how to do vagus nerve stimulation with a TENS machine - you already have a resource on this - http://www.healthrising.org/forums/threads/preparing-tens-leads-to-use-in-vagus-nerve-stimulation-of-ear.2653/

@Cort - I forgot to say that I think a "How to" section is an excellent idea.
Great additions - thanks for adding them and the links!
 

bobby

Well-Known Member
@Cort under diet or pacing (not sure where this would fit in best) I would like to add a 'cooking shortcuts', i.e. efficient ways of cooking, like how to manage making food in larger batches, energy efficient cutting methods, etc. Just some tricks to make it less overwhelming to follow a certain diet.

btw, excellent idea to put it all in one list!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Cort under diet or pacing (not sure where this would fit in best) I would like to add a 'cooking shortcuts', i.e. efficient ways of cooking, like how to manage making food in larger batches, energy efficient cutting methods, etc. Just some tricks to make it less overwhelming to follow a certain diet.

btw, excellent idea to put it all in one list!
Great idea, hey, if you feel like fleshing out those ideas more I would love to hear more.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This thread is fine or via PM whichever you prefer :)
 

bobby

Well-Known Member
HOW TO COOK (for special diets)

Many of us get symptom relief through diet. But it’s not easy to follow a diet when you’re so low on energy. Here are a few ideas that might help those of us who are able to (or have to) cook for themselves…

GET INFORMED
- download meal plans: google name of diet + ‘meal plan’
- follow diet blogs for inspiration, especially the ones focused on chronic illness (example)
- use pinterest to easily find and store recipes

- look into options of frozen/freeze dried/nonperishable foods without additives
- look into healthy premade options: prewashed salad, precut vegetables, rotisserie chicken
- look into emergency meals with long shelf life (canned/preserved fish, crackers, good quality protein powder, milk powder etc) for worse days

- find out what are quick whole foods that fit your diet (pulses like red lentils that don't need soaking and are quick; quinoa is a quick and glutenfree/low carb grain(seed);...)
- find out which vegetables keep well a few days in the fridge after they're cooked?

- look into prices of grocery home delivery, local produce cooperatives, etc.
- think about who you could ask for some help or assistance

FOCUS ON SAVING ENERGY
- kitchen organization (e.g. organize everything so what you need to cook is all in one place)
- divide all the cooking related tasks evenly over the day; then break up every task in smaller bits with rest in between

- most things can be prepared sitting down, maybe some things even laying down
- cook when you’re home alone (no sensory distractions)

- make food in batches on better days + freeze (lots of people online writing about how to do this efficiently)
- invest in a crock pot or rice cooker; focus on one-pot meals like casseroles or meal soup (bone/chicken broth based)

- use a food processor Jamie Oliver style (15 minute meals) for soup, sauce, salad and everything else
- don’t waste energy on cutting hard to cut vegetables like butternut squash, celeriac, red beet: poke some holes in them with a fork or knife, drizzle with oil, wrap in tin foil, bake in oven = easy to peel and ready to eat.
 

Empty

Well-Known Member
1. Under diets, I'd like to add how to be vegan. I have a general guide that makes it very easy (but it took me a while to find out). Namely:
Eat pulses/beans every day
Eat whole grains every day
Eat nuts and/or seeds every day
Eat at least 7 different fruit and veg every day
Eat a source of iodine every day, such as nori sprinkle or iodised salt
Take a B12 supplement (it's unlikely there's enough in a vegan diet)

A couple of sites with nice recipes are:
http://www.forksoverknives.com/recipes/
http://ohsheglows.com/categories/recipes-2/

2. Under supplements, I'd like to add how to take them transdermally. Some will absorb through the skin so tablets can be crushed and added to cream (I do this with zinc and vitamin D). A bath with epsom salts will also get some magnesium into you.

This would be very helpful for those of us who just don't seem to absorb tablets well and/or hate taking them.

3. Under management, I'd like to add relaxation techniques. This is my personal favourite - http://forums.phoenixrising.me/index.php?threads/relaxation-technique-not-based-on-breathing.19928/

4. Under treatment, I'd like to add how to do vagus nerve stimulation with a TENS machine - you already have a resource on this - http://www.healthrising.org/forums/threads/preparing-tens-leads-to-use-in-vagus-nerve-stimulation-of-ear.2653/

@Cort - I forgot to say that I think a "How to" section is an excellent idea.
There r different vegan diets including keto vegan. Upping fat and coconut oil was a disaster for me. What has really helped and will hopefully continue is vegan high carbohydrate, low fat. I only recently heard about it. I can't seem to fathom therapeutic dose of iodine -another imp. Key.

Etw : the key was under 10% Calories in fat before I made gains. No calorie restriction. Anything above that just didn't alter the hormones.
 

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