Resources for CFS / ME

Doesn’t it make things easier when you have a solid resource list of places to get the information you really need without being sold? 

This list is what I’ve found the most valuable in dealing with this horrid disorder.   The Resources for CFS / ME page is an ongoing and ever evolving page of resources. I truly hope that we, together, can find a real solution. In the meantime, maybe the holistic approach just makes sense anyway.  Why not?  Let’s see if our pooled resources can make a difference. 

An Integrative Approach

What that means is you focus on the whole person: Body, Mind, Spirit, Family, Friends, Hobbies, things that bring pleasure, and avoiding those that don’t.  This web page gives a great overview of what we’ve been working on over the past 8 years — not because I’m an expert in CFS / ME, but because I am a holistically focused healthy life coach. This is the plan the Mayo presented – and it’s the plan I work on with my clients.  Why? Well, if you focus on the thorn in your finger, you can do all kinds of things to make it stop hurting, but until you remove it, you still have a thorn.  With that in mind, I focus on a variety of things.  This doctor seems to have a similar approach. 

Integrative Approach similar to Mayo plan as provided
http://www.drpodell.org/chronic_fatigue_syndrome_treatments.shtml#Epstein-Barr-Virus(EBV)

Explaining Myalgic Encephalomyelitis:

The Canadian Study is the most informative and complete work I’ve found. It helped me to understand on a large scale all that was happening to my spouse.
http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

The Hummingbird Foundation provides a lot of information, although I found myself fighting off a sense of negativity. 
http://www.hfme.org/mesymptoms.htm

HMFE Terminology: http://www.hfme.org/meandterminology.htm

NAME: http://www.name-us.org/MECFSExplainPages/ForPatients.htm

How Doctor’s might help: If you haven’t already tried all of these things, you may as well give them a shot.
 http://www.cfidsselfhelp.org/library/how-your-doctor-can-help-if-you-have-cfsme

Mobility

When it comes to a wheelchair – a motorized wheelchair, the problem becomes more than just do you need it. Many questions come along with the decision for mobility help. 
Scooter or Chair
Weight
Will it fit in your vehicle
If it does fit, can you or your caregiver lift it
Insurance? Don’t expect much.  They don’t like to buy equipment when the patient can stand up on their own. It matters not that the patient can’t walk more than 100 feet alone without support. 

We found the Golden Products all worked well for his situation.  This one breaks down into 4 parts, the heaviest being 28 pounds. That made it light enough and compact enough to fit in our smaller vehicle.  It’s better than nothing, works great for shopping and smooth surfaces. It’s a great assist and we highly recommend it. 
http://www.goldentech.com/products/literider-ptc/

Getting tangible help: 

Disabled Parking information for Washington Residents: http://www.dol.wa.gov/vehicleregistration/parkingperm.html

Service Dogs might help with early alert to energy issues: http://aroundwiththehound.com

Getting Back to Work — Keeping your Jobs

JAN – the Job Accommodation Network is a fantastic resource.  It’s funded by the US Department of Labor and includes a plethora of information that can lead you back to working – on your terms.  

CFS and the American Disabilities Act: https://askjan.org/media/cfs.html

An Employer’s Guide to M.E. – a British guidebook that helps sufferers and employers work together to keep staff working and thriving. 

Household help:  

Many of the ‘elder care’ companies offer in home household services. You may not need help with personal hygiene, but desperately crave some time away or for someone else to run the vacuum or do the dishes for a change. That’s what I’m talking about. Or someone to take your loved one to the park. Or something. Caregiving is hard work. When the caregiver is burnt out, help is needed. The following agencies in Washington at least offer some respite. 

I’ve tried a lot of the local agencies and called many national forums, but it took 3 years to line up tangible help and that was really a fluke.  I was looking for something related to Traumatic Brain Injury, and found Lifespan Respite.  It’s a short term fix but will help a lot. Its available only because of a grant, and I’m not sure how long this program will continue. As of March 2015, it is still ongoing: 
http://www.lifespanrespitewa.org/
King County Caregiver page: http://www.kccaregiver.org/

Jewish Family Services has an In Home Care group. It might work. http://www.jfsseattle.org/hca.html

VA Caregiver Support Page: http://www.caregiver.va.gov/

VA Help to stay organized: http://www.caregiver.va.gov/toolbox/toolbox_organized.asp#medicationLog

http://www.withalittlehelp.com/

http://www.advanced-healthcare.com/washington-wa/?c=Snoqualmie

Help for the Caregiver:

First you must understand

Info for Family and Friends: A limited article helping the caregiver figure out how to do it:

Tips for Living With someone with Fibro: http://chronicfatigue.about.com/od/forfriendsfamily/a/lifeafterfmscfs.htm

Complexities of Caring for Someone with ME / CFS: http://www.ncbi.nlm.nih.gov/books/NBK53587/ 

Diet and Nutrition: 

In a nutshell, if  you get rid of refined carbs (packaged foods, processed bakery, processed packaged mixes) and you focus on eating as fresh, flavorful, and high fiber as you can — while also reducing your red meat consumption, cutting out sugar and fast burning starches, you are almost there.  However, there are more steps you can take and the following is the summary of latest worthy trends: 

The Anti-Inflammation Diet

http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

Weil’s Pyramid

http://www.chabad.org/theJewishWoman/article_cdo/aid/1414113/jewish/The-Benefits-of-an-Anti-Inflammatory-Diet.htm

 

The Mediterranean Diet

  http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/mediterranean-diet/art-20047801

LOVE THIS SITE:  OLD WAYS makes the Med diet fun and interesting: http://oldwayspt.org/resources/heritage-pyramids/mediterranean-diet-pyramid