Highest Rated Comments

Long_Illness14 karma

Thanks for your comment Candiedclouds901,

Thanks for bringing up these areas of concern. I would invite you to read the book. It is for people with all long illnesses and not just post viral illnesses. It is merely a resource for ideas on managing your long illness and we specifically address the concerns in your post in our book. Our book completely agrees with the CDC recommendations and NICE guidelines.

CBT is a tool that can be used for specific situations, some people with ME/CFS might find it useful, for example if they have insomnia, where CBTi is helpful for some people. No one is suggesting that people use aggressive exercise or therapy to treat or cure their ME/CFS! That is really outdated.

Check out these references, although not everyone is going to agree on everything on these pages, I think this is a good place to start!



Long_Illness11 karma

Thanks for your questions Janube.

There is not definitive knowledge, but it is an active area of research.

Here is an illustration of the proposed mechanisms that might underlie long covid. https://www.nature.com/articles/s41579-022-00846-2/figures/3

Here is the same article that goes into more detail on the illustration.


In introduction, third paragraph.

From the same article for your second question:

"The impact of vaccination on the incidence of long COVID differs across
studies, in part because of differing study methods, time since
vaccination and definitions of long COVID. One study indicated no
significant difference in the development of long COVID between
vaccinated individuals and unvaccinated individuals178; other studies indicate that vaccines provide partial protection, with a reduced risk of long COVID between 15% and 41%4,5, with long COVID continuing to impact 9% of people with COVID-19." There is a whole section on it you can read that explains the discrepancies.

Hope this helps!

Long_Illness10 karma

Therapy can be a very helpful tool. I like it for people with long illnesses because (if they can access therapy) it can be a good long term relationship for a person to have. The therapist can help advocate for your medical issues and support you while you are in difficult times and also celebrate your good times with you.

However, it is not an alternative to being acknowledged, tested, evaluated and treated for disease.

Long_Illness8 karma

Thank you for your question Kingdavid100!

Fibromyalgia, for those who don’t know, is when someone has widespread musculoskeletal pain for >3 months, usually with other symptoms like fatigue, sleep issues and some will have cognitive issues (ex. Brain fog) and/or psychiatric issues. When someone is examined, they have tender areas of soft tissue, lab testing is normal (you test for other diseases than can cause muscular pain to rule them out).

If your primary care doctor thinks you might have fibromyalgia, they should refer you to a sub specialist to ensure that you are getting the proper testing to rule out other diseases that mimic fibromyalgia. Anyone with fibromyalgia and another rheumatic disease should have their fibromyalgia diagnosed and managed by their rheumatologist. After diagnosis, your primary care doctor should be able to manage many with fibromyalgia. Note: some primary care doctors have special expertise in FM, these recommendations are just generalizations and might not always hold true, this is ideally what we recommend. We realize that some people cannot get into a rheumatologist and might benefit from starting treatment for FM if their primary practitioner recommends its, and that is fine because many of the treatments have generally low risk and can be monitored and managed by a primary care doctor. However, if possible we recommend at least that your PCP consults with rheumatology if possible and especially if your diagnosis is unclear or you are not responding to treatment.

The treatment is:

-Education on diagnosis and prognosis

-Education on evidence for exercise and other therapies

-You will be evaluated for sleep and mood issues and referred or treated for those

-Most patients will be offered a trial of medications (these are medications that sometimes are called anticonvulsants or antidepressants but have been found to be effective in fibromyalgia)

-Most patients are started on an exercise program

For those that don’t respond, we recommend they see a rheumatologist or expert in FM. Combination of medications, referrals to physical therapy, physiatrists, therapists, and multidisciplinary programs focus on FM might be recommended.

The best practice is that all patients should be reassured that fibromyalgia is a real illness and is not imagined or in your head. Your practitioner should be able to explain centralized pain to you (nociplastic pain) if you want to have that discussion.

FM is an area of active research, especially since some people who have had covid infection are now being diagnosed with FM. This means that the number of people with FM is likely going to increase, and so awareness about the disease is important, since there are evidence based treatments that can be trials.

Remember that not everything that is evidence based works for everyone. Everyone is different and that is why its so important to try to build good communication with your practitioners and your illness community. Hope this helps!

Long_Illness6 karma

This term evolved out of our work with patients with Long Covid. We prefer the term "long illness" over "chronic" because it feels less stagnant, more patient centered and includes the undiagnosed, misdiagnosed, overlooked, and ignored. It includes anyone who is experiencing symptoms in their body which linger, persist, or do not resolve on a predictable timeline.