Scholarship for Young Person with ME/CFS in NJ

Copyright: ktsdesign / 123RF Stock Photo

The wonderful NJ ME/CFS Association has an annual scholarship for a young person with ME/CFS (who lives in NJ) - and the award has been increased for 2018! 

Here are the scholarship details on their website.

This is a great opportunity!

URGENT: Tell Senators How Repealing ACA Will Affect You

Even though most of us live in virtual caves, you still couldn't miss all the news these past two weeks about efforts to repeal the U.S. Affordable Care Act (ACA). Both the House and the Senate have already voted to begin the process of repealing it, with a target date of January 27 (you can read details at the links of each vote). And Trump's first act as President yesterday was to sign an Executive Order stating that the states do not have to comply with the ACA. Many Americans think this is a good thing because all they know of the ACA is its requirement for all citizens to have health insurance and its insurance marketplaces, which have struggled in many states.

However, there is a LOT more to the ACA than just the insurance mandate and the marketplaces. The ACA includes provisions that directly and seriously affect everyone with a chronic illness. We may soon find it difficult - if not impossible - to get affordable health insurance from any source. If you think health insurance is expensive under the current system, just wait.

You can read an easy-to-understand summary of the full Affordable Care Act on the HHS website. Pay particular attention to the items under "New Consumer Protections" and "Increasing Access to Affordable Care." Here are a few of the many provisions of the ACA that directly affect those of us with chronic illness:

• Children with pre-existing conditions may not be denied coverage.
• Insurance companies may not rescind coverage (there used to be a practice of dropping someone for a minor technical issue when they got sick and tried to use their insurance).
• ACA eliminated lifetime limits on insurance coverage.
• ACA eliminated annual limits on coverage.
• Consumers can appeal decisions made by the insurance company.
• Even citizens with pre-existing conditions will be guaranteed health insurance coverage.
• Young adults can stay on their parents' insurance plans until age 26.
• Limits on insurance companies' rate hikes.
• Linking Medicare payments to hospitals with their quality of care - the better their patients fare, the more money they can make.
• Prohibiting discrimination based on pre-existing conditions or gender.

That's just the tip of the iceberg - you can read the full list on the HHS website. Everywhere that is says "pre-existing conditions" - that's us. Without ACA in place, insurers can outright refuse to sell insurance to chronically ill people or can make the insurance for us so outrageously expensive that we can no longer afford insurance. The other piece that is very important to my family - and to many of yours as well - is allowing kids to stay on their parents' insurance until age 26. Our son is now 22, and with ME/CFS, plus Lyme and two other tick infections, he is not well enough to work full-time or support himself.

So, what can you do to stop this seemingly unstoppable action? Well, the new President and Republican-controlled Congress are determined to repeal the ACA. But to do so without anything to replace it is irresponsible. They are pulling the rug out from us - and millions of other sick Americans - with only promises that there will be a replacement. We can ask that this process is slowed down and that a replacement is created as soon as possible...preferably before the ACA is officially repealed.

I heard there are 5 Republican Senators who are already in favor of slowing this process down so that it is done right. I have written to these 5 Senators by e-mail to let them know how the ACA affects us, and how its repeal with no replacement would be devastating to us. You can, too. Here are links for e-mailing the 5 Senators or you can call their offices (though I have heard people are having trouble getting through):

Senator Bob Corker, TN - (202) 224-3344

Senator Lisa Murkowski, AK - (202) 224-6665

Senator Rob Portman, OH - (202) 224-3353

Senator Susan Collins, ME - (202) 224-2523

Senator Bill Cassidy, LA - (202) 224-5824

While you're at it, send that same e-mail to your own Senators & Representatives! They will be hard at work on this issue for the next week, so let them know how the ACA affects you and the urgent need for a replacement with many of the same provisions. I found these e-mail addresses just by typing the name, Senator or Representative, and e-mail into a search engine.

Here is the note that I sent to all five (and am now sending to my own Representative (Delaware only has one!) and Senators. Please feel free to copy whatever parts of it apply & then add in your own or your family's experiences & situation. You note doesn't have to be long (I tend to be long-winded!) - just let them know you are here and that heir actions will dramatically affect your life.

We may be sick and often (or always) housebound, but we can still let our voices be heard!

My e-mail:

"I do not live in Alaska, but I represent the needs of citizens across the U.S., as leader of online support groups for those with chronic illness and parents of sick children. I heard that you were one of several Senators in favor of slowing down the process of repealing the ACA, so I wanted to let you know how the ACA protects families like ours, and how its repeal, without anything to replace it, would be devastating to millions of families across the US.

I have been sick with a chronic immune disorder for 15 years that prevents me from being able to work, and I have also struggled off and on with recurring Lyme disease. My oldest son has the same immune disorder (it is genetic), and has very severe Lyme disease, plus two other tick infections; he's been sick for almost 13 years and is now 22 years old. Our youngest son, now 19, also had this same genetic immune disorder for 10 years, but fortunately, his was mild, and he is now fully recovered.

As you can imagine, our medical expenses are sky high. We have excellent health insurance through my husband's employer (I can no longer work), but we still have about $20,000/year in out-of-pocket medical expenses. That does NOT count our portion of the insurance premiums, an additional amount that is automatically taken out of my husband's paychecks each month.

The Affordable Care Act protects us in several ways, though its name alone has become a political lightning rod. We want Congress and others in power to understand that the ACA should not be used to make a political point - families across the U.S. rely on its provisions. The public focus has been on its insurance marketplaces, but the ACA is much, much more than that.

Specifically, the provisions of the ACA that deal with pre-existing conditions affect us and other sick families deeply. If the ACA were completely repealed, with nothing to replace it, then insurance companies could deny us coverage entirely or make our rates so high that we can no longer afford insurance. We already have outrageous medical expenses; without insurance, we would probably lose our house. ACA prevents insurers from taking advantage of sick people. In 2 years, my husband will retire, and we will be buying health insurance on the open market. If these provisions for pre-existing conditions are repealed, I will not be able to get affordable health insurance.

Another part of ACA that affects us and all the other families I represent is the provision that allows us to keep children on our family insurance until age 26. Without this provision, our son would be in big trouble. At 22, he is not healthy enough to work full-time or support himself (he is working his way through college, a few classes at a time, and will graduate next year). Without the ACA, he would have to get his own insurance...and again, insurance companies could either deny him completely or make the rates so high that we couldn't afford it. In any case, it would be far more expensive than keeping him on our family policy.

If Congress believes that ACA is not working as currently written, then it needs to be revised or replaced, not simply repealed. To repeal it without another option ready to go into place is irresponsible and leaves millions of sick Americans - including many, many children - in serious trouble. It's political posturing without regard for its effects on American citizens. There are between 1-2 million American adults with the same debilitating immune disorder my son and I have (the number of children has not been counted) - and that is just ONE disease.

Please do all you can in your position to slow down this process and come up with an alternative to ACA before pulling the rug out from under citizens like us.

Thank you for your time and concern for Americans like us -

Suzan Jackson"

Gifts Made by ME/CFS & Lyme Patients

Copyright: phive2015 / 123RF Stock Photo

I have been meaning to put this post together every holiday season, and I never get the timing right. Hopefully, this is still in time for some holiday shopping! If not...you can use this guide in 2017.

I have gathered together some wonderful handmade products - jewelry, knits, and a wide variety of other handcrafts - that are made by patients with ME/CFS and related conditions, many of them talented young people trying to find their places in the world while mostly housebound. If you choose to buy any of these products, you are not only supporting these talented patients, but in many cases, some or all of the proceeds go toward ME/CFS research and other charities - a win, win, win!

Here are some gifts to consider - for others or for yourself! - this holiday season & beyond:
 
Mia Anderson Jewelry - Mia is a young girl with ME/CFS who creates gorgeous jewelry from semiprecious stones (as well as velvet chokers). Her creations are beautiful, and she donates ALL proceeds to Stanford's ME/CFS Research Initiative, a very worthy cause. You can see her pieces and contact her through her Facebook Page, Mia Anderson Jewelery.

Some of Mia Anderson's bracelets

A necklace from Bergamot Jewels & Knits

Bergamot Jewels and Knits - Another very talented young woman - and a personal friend of ours who lives nearby - creates beautiful jewelry and knit products. She has temporarily closed her Etsy shop in order to take some time off to recuperate & recharge, but you can still order some beautiful items through her Facebook Page, Bergamot Jewels and Knits. I can attest to the beauty and quality of her jewelry myself, as my husband gave me one of her necklaces for Christmas last year!

Clay creatures from SkoffMagid Creations

SkoffMagid Creations - Another young woman with Lyme and POTS (a form of OI) sews and creates unique, intricate items from clay. Her products includes adorable clay creatures, unique stuffed animals, clothing, and pendants. Her mother creates beautiful beaded jewelry that is also available for sale. You can find all of their products on their Facebook page, SkoffMagid Creations.

Rachael's Crafty Corner - So many talented young women with these illnesses! Rachael is 16 years old, lives in the UK, and has ME/CFS plus other health conditions.  She creates a wide variety of unique, personalized gifts. She works with wood and other materials, does a lot of hand-lettering on wood and glass, and plenty of custom work. She has some wonderful holiday items, but they are closing up shop at the end of this week to take a break for the holidays (so I am too late again this year!). There are still plenty of things here that would make great gifts all year-round. Rachael splits her proceeds among 4 of her favorite charities. You can see her products at her Facebook Page or her Etsy Shop. She delivers worldwide.

A collection of creative items from Rachael's Crafty Corner

That's all I have for now, but I would love to feature more patient-made products on my blog! If you or someone you know with ME/CFS or related illnesses creates products that are available for sale, please leave a link to the website, Facebook page, or Etsy site in the comments below.

All of this creativity from our fellow sufferers is inspiring!

Happy Shopping!

2014 Changes to Social Security Ruling for ME/CFS

I watched the CFS Advisory Committee (CFSAC)'s spring meeting earlier this week online, and one of the presentations I found most informative was about recent changes that have been made the US's Social Security Ruling for ME/CFS. Knowing exactly what is in the ME/CFS ruling will definitely help me when I reapply in a few years (I was awarded partial past benefits last year but nothing ongoing), though much will still depend on which adjucator and which judge you are assigned.

In the interest of being timely, I am going to mostly just paste my notes here that I took while I was watching the presentation, with a bit of extra explanation where needed. Please let me know if anything is unclear or if I got anything wrong. I tried to type my notes as I was listening/watching, so hopefully it is accurate, though I may have missed some points.

 

CFSAC Mtg 6/17/14

Social Security – New ME/CFS Ruling

Mark Kuhn – Social Security Administration

New ruling was effective April 3, 2104.

Replaces previous ruling – provides guidelines for adjudicators (those who review disability applications).

ME/CFS can constitute a Medically Determinable Impairment (MDI) and can be severe and disabling.

Adjudicator Considers:

• Symptoms
• Lab Results
• Medical Signs

Sources for the revised ruling included:

• CCC (Canadian Consensus Criteria)
• ICC (International  Consensus Criteria)
• CDC’s criteria (1994)
• Past SSA experience

Symptoms (from CDC 94):

• Profound fatigue 6 mos or more – persistent or relapsing
• Memory or concentration problems
• Sore throat/swollen glands
• Muscle or joint pain
• Unrefreshing sleep
• PEM

Look for add’l symptoms (some of these are new):

• Muscle weakness
• Disturbed sleep patterns
• Visual difficulties
• Orthostatic Intolerance (OI)
• Respiratory difficulties
• Cardiac abnormalities
• GI symptoms
• Urinary or bladder problems

Require objective medical evidence to support doctor’s diagnosis:

Medical signs:

• Swollen lymph nodes/sore throat
• Tender points (from FM)
• Frequent viral infections with prolonged recovery (new)
• Sinusitis (new)
• Extreme pallor (new)
• Weight changes (new)

Laboratory Findings:

• Elevated EBV titers
• Abnormal MRI scan
• NMH (new) – [my note: Oddly, they’ve included NMH here but not POTS – potentially a big problem for some patients]
• Other findings, such as exercise test and sleep study (new)

Adjudicator should consider add’l findings as research continues to advance, for example elevated  HHV-6.

Look for co-occurring conditions such as:

• FM
• TMJ
• IBS
• IC
• Raynaud’s
• Migraines
• Myofacial pain syndrome
• Sjogren’s Syndrome
• Chronic lymphocytic thyroiditis
• New allergies or intolerances (new)
• Sensitivities to noise, odors, chemicals (new)
• Loss of thermostatic ability – chills, night sweats, intolerance of temps (new)

5-Step Evaluation for all SSD applications:

1. Currently working?
2. Severe impairment?
3. Does impairment meet listing? (NO listing currently for ME/CFS)
4. Can the person do past work?
5. Can the person do any work?

There is no listing for ME/CFS which means that ALL ME/CFS applications will have to go through steps 4 and 5.…or could meet an existing listing for another condition, such as “undifferentiated or mixed connective tissue disease” under immune disorders listing.

A listing has the weight of law and takes longer to get through the system than this type of ruling. A ruling is binding for adjudicators but is not binding in a court of law.

Q&A

Could this ruling be a first step toward a listing for ME/CFS?

Maybe someday– need more research and eventually testing that can prove ME/CFS and indicate severity. SS would move forward as soon as there is medical evidence to support a listing.

Numbers for those with ME/CFS who applied for SSDI and those who were approved at various stages?

No current data available. Past data has been presented at CFSAC and should be available on their website.

Is exercise test or neurocognitive testing sufficient to establish disability?

Those would be sufficient to establish MDI, but establishing degree of disability will still rely on steps 4 & 5.

Rejected!

I returned home from vacation to find a response from the Social Security Administration in my mail.

The good news is that they have determined I am not disabled and can still work full-time as a management consultant - hey, isn't that great?  I wish I knew that years ago... think of all the income I could have been earning!

Specifically, they said:

We have determined that your condition was not disabling on any date...

While your conditions caused you to experience occasional bouts of extreme fatigue, the evidence shows your energy level was adequate for your daily activities.  Based on your description of the job you performed as a consultant, we have concluded that you have the ability to perform this same type of work as it is usually performed in the national economy.

Even though I expected to be rejected, this wording still feels like a slap in the face.  My state, Delaware, has one of the lowest approval rates in the U.S. (I think we're fourth worst with only a 37% approval rate in the first step).

I talked to my lawyer today, and they said it's no big deal, to be expected, and they will file the appeal for me.  I kept asking in-depth questions about what else I could send in to prove I'm disabled, but my contact just laughed and told me I'm reading way too much into what is likely a form rejection letter.  She said this is all normal procedure, they'll take care of it and will let me now if they need anything else.

So, more waiting now.

Taking the First Step to Social Security Disability

After nine years of being mostly incapacitated and unable to work more than an hour or two a day, I finally took the first step toward obtaining Social Security disability benefits today by submitting my application, through my lawyer's office.  I don't have very high hopes - in part because Delaware has one of the lowest rates of disability approval in the nation - but I thought I should give it a try to counter our mounting medical bills.

Why did I wait nine years to apply?  That's a good question with convoluted answers wrapped up in both practical and emotional reasons.  From a practical point of view, I always assumed mine would be a tough case to prove since I left my high-paid consulting job voluntarily two years before getting sick in order to take a few years off to spend more time with my family.  As it turns out, that's not actually a big issue, given the rules of the Social Security system.  I had also hoped that I would be able to make enough money writing to make up for at least some of my lost income.  Turns out that's harder than I thought, especially with so little time and energy to devote to a writing career and made even harder with the recent economic downturn.

Emotionally, I was used to being a very strong, independent, self-reliant person, so it's hard for me to admit that I need this kind of help.  I have to admit to also feeling some illogical guilt.  I am fortunate enough to have a spouse with a good job, a very nice home, and few needs unmet.  I hear stories of people with ME/CFS who are completely bedridden, without any family to help support them, who have been turned down for disability.  It makes me feel like what right do I have to ask for help?

But, I know that's an emotional response, not a rational one.  After all, I put money into the Social Security system for all these years.  It's supposed to be available to me if I am unable to earn enough on my own.  There's certainly no question that ME/CFS has disabled me.  Despite my euphoria yesterday over my 36-minute walk, I am still severely limited in what I can do.  In fact, I have been badly crashed since yesterday afternoon (maybe from the walk, maybe from other stuff, maybe from a change in meds on Monday), reminding me that my couch days are far from over.

So, I filled out the many, many forms, listing past jobs, current symptoms, doctors, medications, and blood tests.  At my lawyer's suggestion, I attached a narrative that explains how CFS affects me and what my daily life is like, along with my years' worth of daily symptom tracking and graphs (the lawyer was amazed by my meticulous record-keeping!)  And I'll see what happens.  The extra money would certainly help with our medical expenses, which just keep going up and up each year, maybe even allowing us to finally replace this 30-year old broken couch I'm lying on!  I've heard lots of horror stories about this process.  I don't suppose anyone out there has any success stories to share??

The Cost of an Onion

I read something yesterday that affected me profoundly. It was a post originally written in the Forums at Phoenix Rising. I read it at Cort Johnson's blog (the founder of Phoenix Rising). You should follow this link and read it for yourself because it's beautifully written, but essentially, the writer talks about how 31-day months, like October, are extra-hard when you're on disability because it's so difficult to figure out how to feed yourself for an extra day. She writes of wanting to buy a small onion so she could make a stew and not being able to afford it.

Lately, I have been constantly worried about our finances and how to pay our ever-rising medical costs. Ken and I talk about it all the time. In the midst of worrying about our own problems, though, I see now that I have lost my sense of perspective. I may not be able to earn much these days, but Ken has a good-paying job with excellent (though expensive!) health insurance. We live in a very nice home in a great neighborhood. Although I am careful at the grocery store - comparing prices, buying the store brand, using coupons - I have never, ever worried about any of us going hungry. We pretty much eat what we want to eat (I hear Craig opening the fridge again now!). I haven't been seeing the bigger picture. We are very, very fortunate.

Here's a cool website recommended by a CFS friend, Global Rich List. Go to the site, plug in your annual income, and see how your family compares to the rest of the world. It's pretty eye-opening.

So, while we're worried about paying for plane fare to see Ken's parents, Craig's braces, and our increasing health insurance costs next year, there are plenty of other people with CFS worried about how to pay for a single onion. They're not worried about paying for expensive medicines and specialists because they can't afford any medical care. Maybe some of you reading this are in that position.

I need to remember this when I think things are tough and try to keep a sense of perspective, as well as helping other whenever I can.

In this season of Thanksgiving, I need to remember all that we have to be grateful for.