Wednesday, September 30, 2009

I'm Insanely Itchy!

I'm feeling much better than before. My low-grade fever reached its peak at 99.5 degrees Fahrenheit on Monday. By Tuesday evening my temperature was down to 98.8, and today it was 98.4 at last check (for reference, 98.6 is considered perfect).

The thing about low-grade fevers is that they are high enough that I feel really awful (with headache, achy body, generally feverish, etc.), but they are low enough that I am still pretty functional. My fevers usually hang around 99.0 to 99.2, so the 99.5 on Monday was a bit of a surprise.

Anyway, fevers are not what this post is supposed to be about....

Just so you know, right now I am insanely itchy.

So itchy, in fact, that I've scratched so hard in a few places that I've unintentionally drawn blood. It is taking a lot of self control to not scratch long enough for me to type.

Why am I itchy, you ask?

Here's the background. I've had severe allergies since childhood. A few years ago I had allergy testing and started immunotherapy (allergy shots) for grasses, trees, and dust mites. I've still been experiencing allergy symptoms even though I've been on allergy shots, so I wondered if I had developed a new allergy to my cat whom I've had for just two years (see Healing Power of Pets for a photo of my cat, Callie).

I went to see my allergy and asthma doctor last week, and she scheduled me for a cat allergy test (to be done today).

I was instructed to stop my antihistamines (generic Zyrtec and allergy eyedrops) for one week before my test; however, I could take Benedryl up to 24 hours before my test if necessary. Within a few days of my stopping my antihistamines, I started feeling itchy in my hands and feet. Benedryl was the only thing that helped the itching and allowed me to sleep.

After a long, itchy week (which included my weekend of low-grade fevers) I finally had my cat allergy test this afternoon. On the bright side, I'm not allergic to cats. Hooray!

On the downside, now that I've been a week off Zyrtec my entire body is itchy. Really itchy.

All day I thought that the first thing I wanted to do when I got home was take my antihistamine to stop the itching. However, I also wondered why I was itching so terribly because I did not remember ever itching this much in this way before (except when I was experiencing anaphylaxis after an allergy shot gone awry). It is important to note that I have eczema, but what I am experiencing is not an eczema itch.

Rather than popping a Zyrtec when I got home, I got online. I wondered if stopping an antihistamine after taking it for a long time would cause itchiness, so I searched for "itchy after stopping antihistamine."

Amazingly, I stumbled upon a woman's blog called "Quit Zyrtec, Get Itchy!"

Wow. It described what I seem to be experiencing.

I'm going to test this possibility (i.e., that I am itchy because I stopped taking Zyrtec) by not going back on the Zyrtec for a while (or never again...haven't decided yet). So that I do not go completely insane (and so that I stop scratching until I bleed), I have to take Benedryl to help stop the itching at night so that I can sleep. I may eventually try switching to a low dose Claritin.

I'll be sure to post updates.

I need an ice pack right now.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, mild headache, eczema flare up on right ankle, ITCHING!

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 8 (because of the horrible full-body itching)

Sunday, September 27, 2009

Sick & Georgetown Update

Sorry about the longer than expected absence. I think I'm having a delayed crash from my trip to the Midwest (see Back from the Midwestern US for background). I've been sick with a fever all weekend. I've slept about 16 hours per day (including naps) since Friday and haven't felt up to blogging (or really doing anything).

Ugh. I'm sick of being sick.

I'm still not feeling especially great right now, but I felt the need to post my promised update about Georgetown (see Georgetown CFS Study and Hoping to be a Human Guinea Pig for background info).

The Georgetown research coordinator called me a little over a week ago to let me know that they wanted to schedule me for October. He asked me when I was not available, so I gave him those dates. He then told me he'd get back to me soon with dates they could schedule me. I then asked if they still needed more healthy volunteers, and he answer was a resounding yes. I promised that I would get the word out.

I was really excited after this phone call, thinking that this was actually going to happen for me.

I still haven't heard back...and October is just a few days away. This situation has been dragging on since August 1. I'm suspecting (and a few others have mentioned this to me as well) that they need many more healthy volunteers before they can bring in more CFIDS patients. Unfortunately, it seems that not many healthy people are willing to undergo a voluntary lumbar puncture. Go figure.

Another hitch in the plan is that there is a chance that I may not be able to get the time off from work to participate in the study. This possibility is upsetting to me. Of course, I hope everything works out because it would mean a lot for me to be a part of significant CFS research. I'm not exactly sure why participating in this study is so important to me. It just is.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, eczema flare up on right ankle, low-grade fever.

Mood (10 is best): 5
Energy (10 is best): 2 (after sleeping all day), 1 (most of this weekend)
Physical Discomfort (10 is worst): 4

Tuesday, September 22, 2009

Research Alert: Healthy Volunteers Needed for Georgetown CFS Study

Do you or does someone you know live near Washington, DC (or are you willing to travel there at your own expense)?

Georgetown University is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

I have volunteered for this study (will post an update about this soon); however, they still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests. There is some financial compensation for completing the study.

Call 202-687-8231 or email if you are interested.

Please spread the word. Forward this post, email your friends and loved ones, post info on your blog or message boards, or just stand outside and shout about it.

This is the kind of serious research we need more of!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, nausea, light headed.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Sunday, September 20, 2009

Back from the Midwestern US

I'm back from my whirlwind business trip to the Midwestern United States. In just one week, I visited Iowa, Kansas, Missouri, Nebraska, and Ohio.

I saw so many corn fields on my trip that I decided I needed to get my picture in front of one. That's me in the photo. A friend of mine that I was able to visit in Nebraska took the picture.

Needless to say, the trip was exhausting. Thank goodness I was able to find plenty of time for daily naps.

My body is in recovery mode, so I spent most of today sleeping.

I have to admit it is pretty odd that someone with CFIDS would have a job like mine that requires travel. Travel is one of the most exhausting things a person with this disease can do. I estimate that I end up traveling for work maybe four or five weeks per year (all spread out).

What makes this kind of travel bearable for me is that I am able to sleep well on planes (and any moving vehicles, really). I often sleep from the moment I sit in my seat (before takeoff) until the plane lands. My trip schedules also allow me to take regular afternoon naps or go to bed early.

Of course, these trips do take their toll on me. Still, I enjoy them because I love to travel.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, drowsiness, muscle fatigue.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 2

P.S. Happy (belated) Birthday to my Dad!

Tuesday, September 15, 2009

Blogging for Invisible Illness Week

Yesterday marked the start of National Invisible Chronic Illness Awareness Week, so I am blogging for invisible illness awareness.

I was supposed to blog yesterday and write a meaningful post, but my CFIDS got in the way. I was just too tired. Go figure.

I am currently in the Midwest United States on a grueling week-long trip to five different cities for work. These trips are so tiring that I don't have much energy left for anyone or anything, including blogging.

Fortunately, my fever seems to have left me, and there is time between appointments and travel that I am able to take daily naps. I've also been able to eat some fantastic meals!

Anyway, I'm too tired to write anything more, so I'm going to take a nap. I should get back to my normal blogging next week when I'm back home.

Today's Activities: out of town for work. Today's Most Annoying Symptoms: exhaustion, drowsiness.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 2

Sunday, September 13, 2009

Promising News from the CDC?

It seems that the Centers for Disease Control and Prevention (CDC) is paying more attention to the CFS community and advocates. On September 1, 2009, they posted the following message on their website:

Input on CDC CFS Strategic Research Plan

Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.

Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).

CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas.

To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.

It's wonderful to feel as though my effort to give public testimony at the CDC in Georgia earlier this year was worth it.

Only time will tell if the CDC actually takes all the comments seriously and incorporates them into the Strategic Plan.

I'm crossing my fingers, but I won't hold my breath.

Today's Activities: out of town for work. Today's Most Annoying Symptoms: headache, muscle fatigue, drowsiness.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Thursday, September 10, 2009

All Sorts of Updates

Well, today is Day Three of my latest low-grade fever. It's bad enough that I feel really awful (more so that usual, that is), but not bad enough for me to stay home from work (if you've been following my blog closely for a while, you'll know I'm short of sick/vacation leave).


I've been meaning to post the results of my most recent vitamin D and iron (ferritin) levels for a while, but I kept forgetting (brain fog, you know). Both my ferritin and vitamin D levels went down a little since the last test.

My ferritin level was measured at 38 ng/mL. Previously, it was 41 (last test), 50, and 17 (first test). My GI doctor would prefer to see my ferritin level at around 70, though she's just happy with it being so much higher than 17. Currently, I'm taking high levels of prescription iron only every other day because taking it every day caused massive constipation. I think I'm destined to be on the lower side of normal when it comes to iron levels.

My vitamin D level was measured at 40 ng/mL. Previously, it was 49 (last test), 41, and 29 (first test). My GI doc would like to see a level higher than 50. I'm going to up my dose of vitamin D to 2,000 IU per day (I've been taking 1,000 IU per day since my first vitamin D test).

In my July 2 post Human Pin Cushion, I mentioned a micronutrient blood test for which I had blood taken. Over a month passed, and I didn't hear anything from my doctor or the lab. I called my doctor's office who, in turn, called the lab who said that the sample had been damaged so they couldn't run the test. Great. They didn't even bother to inform anyone about this.

I ended up going back to get blood drawn for this test a week or so ago (can't remember exactly when). I'm still looking forward to the results because they'll indicate if I'm missing essential vitamins or minerals.


See Hoping to Be a Human Guinea Pig for background. I still have not had the opportunity to give a single drop of blood or other bodily fluid for the sake of CFS research. This disappoints me. Researchers at both Georgetown and the University of Illinois - Chicago have told me that they'll get back to me about my possible participation. So far, I've heard nothing. Nada.

On the upside, I'm participating in a fatigue study through the University of Utah. I've also submitted surveys for the University of Michigan's Chronic Illness Survey and the National Fatigue Survey through the Florida Institute of Technology's Fatigue Management Institute. I'm interested in looking into the University of New England - Australia's fatigue study. I plan to do that when I have the mental energy.

I'm really much bigger on the blood and bodily fluids kind of research, but at least surveys are better than nothing.

MY NEW TREATMENT PLAN (methlyation protocol)

On July 13 I announced that I was Starting a New Treatment Plan. Unfortunately, there's not much to report yet because I haven't gone back to get my glutathione level tested again. I'm still taking the doses I listed in my treatment plan post every other day.

Physically, I don't feel any improvement, but that doesn't necessarily mean I'm not improving. According to the research and anecdotal information from others on the protocol, some people go through a period of "detox" that makes them feel worse (or just not better) before they actually start to feel better.

I do know that my body chemistry has changed or is changing. I used to feel cold very easily nearly all the time (even when others felt warm). Now I get what seem like hot flashes, where my face flushes red and I start to sweat profusely.

All I can say is that I'm not giving up, and I will report any changes in a future post.

Today's Activities: work. Today's Most Annoying Symptoms: headache, nausea, dizziness, muscle fatigue, sinus pressure, low grade fever.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

Monday, September 7, 2009

30 Things About My Invisible Illness...

From the Invisible Illness Week website:

We've all seen the list “20 things about me” “50 thing about me you didn't know…” They can actually be interesting if you want to get to know the person better! Well we've got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS...a.k.a. Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)), Irritable Bowel Syndrome (IBS), Polycystic Ovarian Syndrome (PCOS), asthma, and more...

2. I was diagnosed with it in the year: 2005, 1999, 2003, 1998, respectively.

3. But I had symptoms since: 2000 (probably earlier), don't remember, since puberty, 1996.

From this point on, I will be answering questions primarily with CFIDS/CFS/ME in mind.

4. The biggest adjustment I've had to make is: strictly limiting my physical activities and outings.

5. Most people assume: I'm young and healthy because that's how I appear on the outside.

6. The hardest part about mornings are: waking up

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: my two alarm clocks.

9. The hardest part about nights are: falling and staying asleep.

10. Each day I take 12-15 pills & vitamins. I also get regular allergy shots (immunotherapy) and additional shots for my CFIDS. See Current Medications and Supplements.

11. Regarding alternative treatments I: am open to them as long as data supports their efficacy and my physician approves their use.

12. If I had to choose between an invisible illness or visible I would choose: visible - people wouldn't question my illness if they could see it.

13. Regarding working and career: I will work as long as I am physically able. I am working to further my career as if I will be healthy the rest of my life. However, I live with the uncertainty that my illness may force me to leave the workforce altogether.

14. People would be surprised to know: I am a classically trained singer who was once on her way to an operatic career. Sadly, I no longer sing. I also wanted to attend medical school, but my illness forced me to choose another career path.

15. The hardest thing to accept about my new reality has been: all of my physical limitations.

16. Something I never thought I could do with my illness that I did was: become an advocate and meet with members of the US Congress on Capitol Hill.

17. The commercials about my illness: do not exist.

18. Some things I really miss doing since I was diagnosed are: international travel, martial arts, hanging out with friends.

19. It was really hard to have to give up: physical activity.

20. A new hobby I have taken up since my diagnosis is: advocacy for people with CFS.

21. If I could have one day of feeling normal again I would: cook, clean, and go grocery shopping so that my husband wouldn't have to.

22. My illness has taught me: patience.

23. Want to know a secret? One thing people say (especially when they know I am sick) that gets under my skin is: "You look good!" Of course, I look good on the outside. I have an INVISIBLE illness. I feel terrible on the inside.

24. But I love it when people: genuinely want to learn more about my illness.

25. My favorite motto, scripture, quote that gets me through tough times is: "Everything happens for a reason." (Also, "What doesn't kill you makes you stronger.")

26. When someone is diagnosed I’d like to tell them: there is a vast online community of others with this disease who understand what you are going through. There is no need to feel alone.

27. Something that has surprised me about living with an illness is: the amount of support that is out there, as well as the amount of disbelief that is out there.

28. The nicest thing someone did for me when I wasn't feeling well was: make me homemade chicken soup and bring it to me in bed (my husband Kenny has done this on more than one occasion).

29. I’m involved with Invisible Illness Week because: I am passionate about CFS education and advocacy.

30. The fact that you read this list makes me feel: wonderful.

Find out more about National Invisible Chronic Illness Awareness Week at

Today's Activities: home (hooray for Labor Day). Today's Most Annoying Symptoms: headache, dull pain in lymph nodes in neck, muscle fatigue, sinus pressure.

Mood (10 is best): 6
Energy (10 is best): 5 (hooray for long weekends!)
Physical Discomfort (10 is worst): 4

Saturday, September 5, 2009

I Can't Remember What I Forgot

What was I saying?

What were we talking about?

I'm sorry, would you say that again? I didn't understand.

Remember when we were talking the other day about the thingy in the whatchamacallit? What did we say about that? I can't remember.

The MRI I had last year because of the severe migraines I was experiencing showed no brain tumors or evidence of MS. There is nothing obviously wrong with my brain, yet my brain is the constant location of some ongoing battles: brain fog and memory problems.

Brain fog and memory problems are two nebulous symptoms of CFIDS that manifest themselves in varying degrees of severity. The combination of the two make communicating intelligently a much bigger challenge than before I got sick. Since getting sick about ten years ago, I feel as though every year I lose a few more IQ points.

When I am experiencing brain fog, I feel as if my brain is trying to wade through thought processes in a thick muck. It takes longer for me to comprehend what is being said or what I am trying to read. When my brain fog is really acting up, everything might as well be spoken or written in Martian.

Everyone forgets things from time to time, but I have found that my forgetfulness has become a problem. If I don't write important (or even unimportant) tasks down, I will not remember to do them. I have to take copious notes during meetings, or I will most likely forget most of what was said. Ironically, it is difficult for me to take notes during meetings because of my brain fog.

The worst part about my memory problem is that I sometimes forget conversations or occurrences completely. That is, I will have no residual memory of the event whatsoever. It's somewhat alarming when this happens.

Fortunately, I have come up with various techniques to compensate for some of my brain fog and memory problems -- mostly asking questions and taking notes. Still, I would really like to have my brain back to normal. I can't wait until I'm healthy again!

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, brain fog, intense intestinal discomfort.

Mood (10 is best): 6
Energy (10 is best): 4 (after sleeping all day)
Physical Discomfort (10 is worst): 5

P.S. Happy 42nd Birthday to my brother!

Friday, September 4, 2009

Advocacy Alert: CFS Advisory Committee to meet in October

This just in from the CFIDS Association:

CFS Advisory Committee to meet in October

The federal CFS Advisory Committee will meet next on October 28-29, 2009 in Washington, D.C. The meeting is open to the public and time has been reserved on the agenda to hear testimony from members of the public.

Posted below is the September 4, 2009 meeting notice from the Federal Register, which can be viewed at

[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Page 45857]
From the Federal Register Online via GPO Access []


Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.

ACTION: Notice.


SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.

CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site,, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.

Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to to register. Public comments will be limited to five minutes per speaker.

Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.

Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]


I attended the CFSAC meeting in May 2009 and gave public testimony. The day after I spoke, I started this blog. Unfortunately, I don't think I will be able to attend the October meetings because of my work schedule during those days. If my schedule changes, however, you can bet I'll be in Washington, DC for the meeting.

If you have CFIDS/CFS/ME (or if you know someone with it) and are physically and financially able to attend, I encourage you to go and give your personal testimony about how this horrible disease has affected your life.

If you can't go in person, give your story by phone if they allow phone testimony (they did last time). If you are not physically able to call in, then send in your written story. If it is too difficult to write, then know that there are people at the meeting who are still advocating for you.

The more we make our presence known, the bigger difference we'll make!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, brain fog, slightly achy lymph nodes in neck.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 3

Tuesday, September 1, 2009

Thief! Stealing our marriage (Post by Kenny)

The following post is the second of several by my husband, Kenny. Thanks for reading! ~Alyson


Having a loved one that has CFS is like being ripped off. This disease affects everything. And when I say everything I mean “EVERYTHING”. The emotions that I have and the quality of life are not even close to that of what Alyson has to go through. The tears and isolation that she endures is something that I compassionately and sadly endure with her. But, that does not neglect the point that this disease has stolen a lot from our marriage.

It is not an isolated disease that just affects one person, but robs the whole family of life. We don’t get to go on walks, workout together, go to parks or other physical activities without major consequences. Instead of having Alyson crash and burn, we limit, almost to non-existent our activities. Weekends are for recovery from long weekdays.

Please, if you don’t have CFIDS and are thinking that you do the same, wake up! You choose to lie around on the weekends without any action. Alyson is forced by having no energy. Completely different, not even comparable, don’t even go there!

If you really want to test the strength of your love and your commitment towards your spouse, try having one with this disease. Alyson does her best to help out, go on dates, and do some chores along with anything else she can muster the energy for. Even with sacrifice, her life along with mine is being high jacked. Stolen are the basic enjoyments for couples to enjoy one another. Things that too many couples take for granted. Not truly enjoying that walk with your wife, or that weekend drive through the country? That is a shame. Unfortunately, we don’t get that privilege along with many others.

I am not looking for sympathy, but I am trying to express the seriousness of this life altering disease. It does not just smack one person in the face; this illness spits, steals, mocks and walks away leaving an entire family in a ditch looking for some help. When other loved ones don’t fully acknowledge this, they too are kicking dirt in the ditch. Please don’t bury family and friends that are suffering. Having this disease is isolating enough that they don’t need any added misery.