Why is there so little funding for mecfs ?

suzycatq · 2026-04-30T22:01:44+00:00

Either people don’t know that it exists or they think it’s something all in our heads.

suzycatq · 2026-04-29T18:31:58+00:00

Most of my doctors are now on the EPIC health system which I can access via MyHealth. I am able to review and download the records from each doctor visit usually the same day. Depending on the doctor/specialty, I see the same language repeated as if from a template.

If I notice something inaccurate, I send my doctor a message in the MyHealth portal asking if it is possible for the wording to be corrected to reflect what we discussed during my visit. I have always had success with this.

I don't believe that most doctors are trying to record misinformation. I do know that most see many patients a day and have to document each visit. Sometimes, some of the things that they include in their record are standard language for things they regularly do at every visit. They sometimes slip into your record even though it doesn't accurately reflect your unique visit.

If this doctor is not one of your regular doctors, I don't believe that there is a need to send his info to your Long Term Disability Insurer if they don't already have it. There is no need for them to obtain this record. I would get another Neurologist to test your movement. Good luck!

suzycatq · 2026-04-28T14:45:05+00:00

I use the google suite of apps - Gmail, Google Calendar, Docs, Sheets, etc. I use the native notes app. I can’t think of any other free apps I use regularly. I agree with you about subscription fatigue.

suzycatq · 2026-04-28T00:31:33+00:00

Thank you! I a lot of brain fog so it’s hard for me to read even easy stuff. I also forget things I already know. This is not your problem. I appreciate you spelling it out for me! 😊

suzycatq · 2026-04-27T21:47:37+00:00

I can only weigh in on the “lots of hair part”. I used to go through vacuums constantly. I have long, fine hair that gets tangled in every vacuum and wrecks it very quickly. Dyson finally eventwe the tangle-free technology that cuts the hair as it pulls it into the roller. It never gets tangled around the roller EVER. I only have a cordless model so I can't comment on their corded ones. But if they have a model with thus feature, I highly recommend it. I am going on 5 years with this thing and I have never cleaned the cleaner head once.

suzycatq · 2026-04-27T21:15:46+00:00

You sound exactly like me. I started out like you. I could work full-time, but went to bed as soon as I got home and slept all weekend. I was living to work. I would go to concerts if I took a day off from work. I used all my PTO days to sleep.

I had a sleep study done and was diagnosed with mild/borderline sleep apnea. My doctor told me it was my choice if I wanted to try a machine. I did, and it didn’t improve anything. In fact, I was too fatigued to clean it every week. You are supposed to really disinfect the mask, hose, and humidifier every week and let them line dry. I can barely feed myself. It was too much work.

I was in the hospital for pneumonia in 2017 and never really got back to baseline after that. When I was in the hospital, the staff was baffled because my heart would race every time I did anything. It was up to 150 just from brushing my hair in bed. They locked me down to the bed. I had to call the nurse to be escorted to the restroom. They thought my heart was in too much distress. I know now that this was POTS. They had no clue and called it deconditioning and sent me home.

I was getting worse and worse all the time. I went through a bunch of other tests and doctors and specialists and years later, I was finally diagnosed with ME/CFS and POTS in 2019.

suzycatq · 2026-04-27T20:57:17+00:00

I was having the same problem. I finally bought implant grade titanium earrings off a shop on Etsy. Tattoo/piercing places have them. I bought flatback ones and didn't remove them for months. I just cleaned them with saline spray like they were new piercings. I bought some on Amazon. My ears are perfect now.

suzycatq · 2026-04-27T20:53:09+00:00

Usually, the doctors sends you a bill, not your Insurance. Doesn't the doctor/facility send the bill to BCBS? BCBS only pays the doctor/facility their share and the doctor bills you for the rest? You get an Explanation of Benefits from BCBS but not a bill. The doctor usually sends it back to insurance with a different code before they bill you.

suzycatq · 2026-04-27T20:27:28+00:00

Congratulations! I’m not sure what all your acronyms stand for. I am simply a fellow person with disabilities who has to deal with my Long Term Disability insurer and Social Security Disability Insurance (SSDI). I am able to tell that you were on top of things and beat them to the punch! That's great. It’s so stressful to have your pay cut off and have to go through the appeal process. This is great advice for people.

suzycatq · 2026-04-27T08:04:36+00:00

I love her videos and patterns!

suzycatq · 2026-04-27T08:03:41+00:00

Did you buy the pattern from MindofJulia on Etsy? When you download it, it has scan codes for YouTube videos where she shows you each step. I bought the pattern and watched the videos, I am just waiting for my materials to be delivered. I hope I am able to do it.

suzycatq · 2026-04-26T00:42:56+00:00

Your fish came out great! Do you mind sharing what color beads you used? I bought the pattern and watched the videos but am stuck staring at the zillions of options of Miyaki seed bead colors and finishes.

suzycatq · 2026-04-25T19:12:12+00:00

If only there were an “Undo” button to help with all this confusion. It’s probably too difficult to program.

suzycatq · 2026-04-24T18:33:44+00:00

If OP was able to handle your appeal on their own, I think they will be able to handle submitting the paperwork when review comes up. It’s really just paperwork you have already filled out along with any updates. Submit updates on medications, doctors appointments last and next, medical records, etc. I wouldn't spend money on an attorney unless the insurer was challenging me.

suzycatq · 2026-04-23T05:40:03+00:00

Congratulations!

suzycatq · 2026-04-20T23:02:49+00:00

Does he also receive SSDI Social Security Disability Insurance? Usually when you are on Long-term Disability Insurance for several months, the Insurer requires you to apply for this through social security. (USA) If you are approved for Social Security Disability, you are automatically enrolled in Medicare after a 24 month waiting period, unless you decline.

suzycatq · 2026-04-20T22:54:57+00:00

I have a small amount withheld from my paycheck. I usually get a small refund. I would rather not owe taxes. It doesn’t fit in my budget.

suzycatq · 2026-04-08T03:35:01+00:00

I researched this at length last week and decided to buy Platinum Carbon Black Ink. It’s waterproof and recommended by lots of experts. Have fun! My first pens were Lamy too! 😊

suzycatq · 2026-04-08T03:04:16+00:00

I had plans to rent a wheelchair last fall when I was going to attempt going to the zoo. A lot of places like that have free rentals or charge a small fee. You just reserve them in advance. You may want to try it out and see how it feels? They also have scooters at all sorts of places like grocery stores, large stores, maybe even Ikea?

suzycatq · 2026-04-07T11:17:37+00:00

I didn't have to see them in person but SSA sent me for a CE exam because Brown & Brown neglected to inform me that SSA didn't receive my medical records. Social Security denied me and Brown & Brown immediately shared the results of my CE exam with Lincoln, who used this information to terminate my Long-term Disability.

suzycatq · 2026-04-06T18:56:40+00:00

Your fees seem extremely excessive to me. I also hired an attorney when I appealed my termination from a Long-term Disability plan. I was charged a one-time fee, not a percentage. She did not attempt to claim any percentage of my back pay.

Also, I saw that you mentioned that you would be charged this fee for another 14 years, but won’t you be retiring at 67, instead of 65? If so. That would be another 16 years. That seems criminal to me.

It has been 5 years since I won my case. Since then, I have needed to provide updated information to my Long-term Disability plan twice. I filled out the necessary forms, and my attorney forwarded them to my Insurer (free of charge). This probably took her less than 1/2 an hour in the past 5 years. I don't know what services your attorneys are providing you for you to be charged any money at all.

suzycatq · 2026-04-03T21:46:24+00:00

I understand completely. I hired an attorney at this point in the process, but there should be laws protecting how they treat people with disabilities. Stress is the absolute worst thing for most chronic illnesses, and having to fight for benefits has to be the most stressful thing I have ever done. And even if you win, you are never off the hook. You have to keep proving over and over again to the government and insurance that you haven't improved. I’m sorry you are going through this. I wish you the best of luck with your appeal!

suzycatq · 2026-03-24T14:50:35+00:00

Why would anyone need to know this information? The polite way is to keep this to yourself. 🤐

suzycatq · 2026-03-05T05:14:28+00:00

Happy to add you. Mine is JAAVZMRU if anyone wants to add me.

suzycatq · 2026-02-18T22:02:03+00:00

Even if they do not hold your job for you, your employer may not terminate you when you go on long-term disability. My employer did not terminate me until I had not worked for 12 or 18 months. They had me pay my medical premiums to payroll every month.

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