EDIT: Hi all! This AMA has ended. Thank you for all the great questions! We wish we could have gotten to all of them. We encourage you to reach out to us Instagram at longillness. You can also check out our website, which includes links to places you can find our book if interested: https://longillness.com/.

Dr. Meghan Jobson is an internist with specialized training in integrative and palliative medicine. She cares for people with long illness as a physician with the San Francisco Department of Public Health. Dr. Juliet Morgan is a neurologist, psychiatrist, and integrative medicine physician. She cares for patients with long illness in private practice and is an assistant clinical professor in the Department of Psychiatry at the UCSF Weill Institute for Neurosciences.

We are the authors of Long Illness, a practical guide to living with long illnesses, from autoimmune disease to dysautonomia, long COVID to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to chronic pain or depression.

Using evidence-based integrative medicine, we’ve put together a program that legitimizes long illness and validates concerns where other physicians often dismiss them. Some things we cover are: • The foundations of long illness and what it means for your life• How to work with your medical team to get the care you need • Common symptoms • A wide range of accessible healing techniques • Your mental health with long illness and how to manage it• Long term solutions

Ask us anything!

Proof: Here's my proof!

Comments: 189 • Responses: 34  • Date: 

Candiedclouds901216 karma

Interesting that you’re stating that your book is a “Guide to…healing and thriving” and “recovery” when there have been millions of people with post viral illnesses that have done everything in your book and maybe even more to no avail. You’ve stated things like CBT that have actually harmed many with post viral illness and now is discouraged as a therapy and was removed as a treatment by the CDC for myalgic encephalomyelitis (ME/cfs).

What makes you confident that the information in your book will guide millions to “healing” and “recovery” when the recommendations in your book are so outdated that the CDC removed these “treatments” in 2017?

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!



Carl_The_Sagan11 karma

What’s wrong with CBT?

fighterpilottim82 karma

Nothing on the face of it. But it is widely used by doctors who don’t understand new, rare, or chronic illness to dismiss patients as “it’s all in your head,” or “this is caused by anxiety.” Multiple schlerosis, ulcers, and an infinity of other conditions were once chalked up to anxiety, psychosomatic causes, or stress. CBT is great, but it is not a solution for autonomic dysfunction, organ damage, blood clots, or any of the other organic causes of long Covid. When doctors don’t understand these issues, the default response is “work on your mental health.” It’s dismissive. And in some cases, it’s gaslighting.

ugh_ok_lets_go47 karma

CBT isn’t meant to be a cure for long illnesses. There is significant mental anguish that goes along with these diseases and CBT can help one manage the negative thoughts and stress of living with these disabilities. It should go along with treatments for the actual disease (if there are any). And if there aren’t treatments, it’s even more reason to get mental health help for the hopelessness.

This is one internet stranger’s opinion at least.

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_Illness5 karma

100% agree! CBT is one of many tools that can help in certain situations.

Doctors dismissing and gaslighting patients is not appropriate. It has happened to me more times than I can count, even as a physician. There are great articles written by others about their experiences. It speaks to many large structural issues in medicine.

However, it's 100% okay for you to say, "Hey, I feel like you are dismissing these symptoms." We talk about this in our book, because it's such a common problem. Sometimes talking about it is really helpful. I have had some patients call me out before, and while sometimes I am a little defensive, I honestly am thankful that I am getting feedback so I can be a better practitioner to everyone. Many doctors want to do a good job, so tell them what you need.

Sometimes, it's just not a good match. Sadly for some of us, we are stuck with the practitioners we have. Just so you know, most doctors are not happy with the system the way it is either.

ThoughtCenter8746 karma

Why do a lot of doctors not believe that conditions like CFS exist despite them being medically recognized diseases, and how do you get physicians to recognize that patients have such diseases without being brushed off?

How do doctors diagnose conditions like CFS which often do not have many physical markers of their presence?

Is there any hope that ME/CFS will be more medically recognized by doctors and healthcare workers in the near future due to the medical recognition of long covid?

jonlucc6 karma

I’m not the OP, nor am I a doctor, but I was at a big immunology conference last week. The good news is that ME/CFS has gotten a lot of attention in that community, and I suspect part of the reason is crossover with similarities to Long COVID. That will almost certainly lead to a better scientific understanding of the disease (or diseases if it turns out to be a cluster of diagnoses that appear similar), which will trickle down to physicians.

Long_Illness3 karma

Thanks for sharing this jonlucc. I am excited to hear this.

Long_Illness3 karma

Thanks ThoughtCenter87 for your questions! Dr Jobson here.

  1. “Why do a lot of doctors not believe that conditions like CFS exist despite them being medically recognized diseases, and how do you get physicians to recognize that patients have such diseases without being brushed off?

When things change, that is hard for some people. When things aren’t easily testable, some people are frustrated by that. I can’t speak for these people, because I have never been taught or thought that these were not real diseases. The medical system has a lot of systemic issues that don’t reward, and often penalize, practitioners who provide quality care to patients. Practitioners are burnt out and most do not agree with how the system works.

For those who are frustrated with dealing with patients that don’t have a “straightforward” issue (quotes because some things we think are straightforward end up becoming complicated!) or might not even believe something exists - I encourage them to think about what it must be like to be in the patients position. Most practitioners, if given a little time to empathize, will come around. Most practitioners came to medicine because they wanted to help people feel better. The system can make some jaded and come across unkind. I am sorry for that and I am hopeful things will change in the future. It has to, for all of us!

​2. “How do doctors diagnose conditions like CFS which often do not have many physical markers of their presence?”

In diseases that do not have a sensitive and specific test, usually there is an organization of experts on the disease that meets and agrees on diagnostic criteria for a disease. These criteria are not static and change as we learn more about diseases. Physicians who have been trained more recently are more likely to include patient groups and patients in these discussions because they are the true experts in the disease experience. This can be very helpful and for example in the ME/CFS community it was patient advocacy that led to changes in recommendations for treatment. For ME/CFS specifically there are several groups that have diagnostic criteria and most practitioners will use one of these sets of criteria to give a diagnosis. It can be helpful to get a second opinion for diagnoses of all kinds. If you have that access, I encourage it. If not, you can ask your practitioner if they can talk to a colleague. Many practitioners do that as part of their general practice before diagnosing someone with a significant disease like ME/CFS, to make sure they aren't missing anything else.

3. “Is there any hope that ME/CFS will be more medically recognized by doctors and healthcare workers in the near future due to the medical recognition of long covid?”

Yes, I am hopeful that because there has been a huge increase in numbers of people who have long illness, that research funding will increase. Certainly long covid has been associated with blossoming or unveiling of other conditions that might have been lingering or might be triggered by the covid-19 infection. It’s going to take time to sort it out, but people are working on it. I have hope that the future generations of doctors will be more open minded, patient centered, and aware of the limits of their discipline.

Kingdavid10034 karma

What is your thoughts on Fibromyalgia and best effective treatment? Thanks

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!

Kingdavid1002 karma

Thank You for the reply. If a patient has tried all the available medication and other options and still in pain, would you recommend them to try tramadol as an option?

Long_Illness3 karma

Sadly, I can't give medical advice on the forum.

Sorry if you are struggling, I have dealt with pain and it is really hard.

Personally, I do not love tramadol and the data isn't great. Guidelines recommend against prescribing opioid medications in people with FM. Our pain chapter includes lots of integrative treatment options to trial for pain and non-pharmalogical interventions. You can check it out at your library if you don't want to buy a copy.

Janube32 karma

Is there any definitive knowledge on what long covid actually is?

Is it just relatively permanent damage done to the central nervous system by the virus, or is it something weirder since some cases of long covid symptoms seem to resolve in six months?

And while I'm fully vaxxed/boosted, my reading of preliminary analyses suggested on the surface that the vaccine(s) had little effect in preventing long covid even if they offer significant reduction in the severity and mortality rate of the initial virus. Is that accurate or has there been new data suggesting that the vaccine(s) also prevent long covid?

Thank you!

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!

Even-Yak-984626 karma

Why do so many doctors call their patients crazy when they have mecfs with a clearly malfunctioning immune system? I'm talking about autoantibodies or t-cells not being normal. Does being crazy cause autoantibodies or t-cells to behave differently?

Long_Illness3 karma

Maybe its where I trained, but that is not what I have experienced. I am hopeful that as more education and research is available that the older doctors that were not trained on this will learn that ME/CFS is real. Crazy is not a medical term! It's a pretty useless term and we shouldn't ever use it. Sorry if you someone ever used that with you or a loved one.

the_watdabney13 karma

I was diagnosed with Ankylosing Spondylitis several years ago, but had been showing symptoms for nearly 20 years (since my late teens). I had no insurance for much of that time so any time I did go to the doctors, I was basically just mounting debt with no answers as no doctor would do anything but send me for an MRI and tell me to take tylenol (no evidence of problems, yet chronic debilitating pain off an on for years).

How do people convince a doctor that the issues are real? How can anyone get a diagnosis if there is no attempt to dig deeper into family history or any other medical tests?

Now that I have a diagnosis, I've been being treated with biologic infusion therapy (Avsola every 8 weeks) as well as NSAIDS (Nabumatone 1000mg/day). I'm in the process of changing Rheumatologists and the new one says that the medicines I'm on are not very safe for long term use. I've known this from my own research into my condition, so what are the alternatives? The Avsola is supposed to be slowing the progress of damage to my spine (degenerative disk disease, bulging disks, compressed disks, multiple levels of osteophytes from my cervical, through thorasic, into lumbar and in my SI joints, which were described as "near fusion"). The NSAID I'm on is the only one that I've been able to take without severe side effects, but my blood work has been coming up with various levels (kidney and liver numbers) being above normal range for a long time now. The rheumy says she will be changing my medications in the near future. What else is there to be looking at? (She mentioned an oral biologic to replace the Avsola, but can't remember the name at the moment.)

I haven't had a major flare up since I started the Avsola, but have had increases in pain frequency. What used to be once or twice a month of real bad days has turned into several days each week. I finally started receiving disability this year after years of struggle and fighting for it. I can barely make a meal without having to collapse afterwards from the pain. I'm 45 now, what is my future going to bring?

(I realize this is a lot of questions and probably most you can't answer without my full medical history/record. Just looking for general advice for moving forward and trying to restore some of the life I've lost due to these issues.)

edit:Realized I didn't even mention the mental health issues I've dealt with over the years, but they are just about as severe as the chronic pain and other issues... Diagnosed with BPD in teen years, many different meds and hospitalizations all through late teens, 20s, and 30s, even had an episode 3 years ago which landed me in the hospital for 12 days.

BobsonDonut7 karma

Your story is very similar to mine. Basically either being ignored or accused of drug seeking by most doctors until eventually I got a diagnosis after almost 15 years of symptoms. I’ve had the most benefits from injectable biologics (simponi) but I do get really bad flares sometimes and I find high doses of CBD with moderate to low amounts of THC really help with those. CBD is a known anti inflammatory and TNF-alpha inhibitor as well, and the THC kind of has a narcotic effect helping you ignore the pain, which is why I think it works so well. It does interact with some NSAIDs and steroids like prednisone and may affect your mental health in some way so definitely ask a pharmacist or your doctor before trying. Other things that worked for me were cutting out fast digesting carbs (sugar, alcohol, pasta, most bread, chips etc.) quitting smoking and strengthening my lower back and legs with weight training. Foam rolling, and a heating pad can really help as well although now I find I rarely need them anymore. At 37 my body feels better than it did at 18. This is all probably stuff you’ve heard before but hopefully some of it helps a bit.

Long_Illness3 karma

Thanks for sharing BobsonDonut! Sorry you were treated like that.

PoemTime41 karma

Is there a CBD brand you would recommend? There are so many w/ vary results & reviews :( It costs too much money to do trial & error when you're in so much pain :( Thanks so much. Thanks in advance or you can DM it.

BobsonDonut2 karma

Honestly, the point of my comment which I didn’t do a good job of explaining is you kind of have to try a lot of things to find what works for you. These are the things that worked for me, but everyone’s different. You may have to try different diets, exercises, and products to find what helps you. I also want to emphasize the biologics helped more than anything else by far. That is the first step to explore imo.

Also, I live in Canada where these products are legal and accepted so I realize it’s not an option for anybody. Personally I use Monjour Orchard Medley 30mg CBD gummies, and I’ll take about 3-5 on a day I have a flare with 1 Drift brand 10mg THC gummy if I’m in like 7-8/10 pain. If I’m not in a flare up, I’ll take a much lower dose of CBD with no THC to help with the anxiety/depression that comes with chronic pain. Again this stuff can interact with common medications used to treat arthritis so I’d ask a pharmacist first if possible.

Long_Illness2 karma

you kind of have to try a lot of things to find what works for you. These are the things that worked for me, but everyone’s different. You may have to try different diets, exercises, and products to find what helps you.

Great advice to anyone who is struggling. Thanks BobsonDonut! Good tips on checking with your pharmacist, all types of medications can make you feel funny or worse. When you first try a medication, let your practitioner know if you have any side effects.

kranbes3 karma

Support policies that expand access to primary care, train more primary care physicians, and improve reimbursement for primary services that not based on the fee for service model. Most doctors are overburdened with patients and “digging deeper” to find the 1 in 1000 patient with back pain that actually has ankylosing spondylitis takes time with your patient. Time and continuity. Also, Doctors are lied to, manipulated, and “gaslit” by patients frequently (I know this goes against the general “doctors are the monsters” theme of this thread, but it’s true), so finding a doctor that hasn’t become jaded and maintains objectivity is going to be important. There are doctors out there that believe their patients and that still wouldn’t make a diagnosis of ankylosing spondylarthropathy easily. It’s inherently a difficult diagnosis to make.

Long_Illness1 karma

Agree kranbes! Although I will say that I think many patients who come to me, even if they are lying about something, they are suffering. Lots of people lie for many different reasons and it's okay. When you are sick and have been treated badly by a system that is supposed to help you, I get it. I think as a society we need to be more compassionate to people with illness and disability, and to ourselves. Lots of changes need to happen in biomedical medicine, I am hopeful we are moving in the right direction.

In our book, we talk about how finding anyone- any kind of practitioner or advocate, just ONE PERSON, can help you on your path. It might not be a doctor, sometimes my best advocates have been a physical therapist, a friend, an acupuncturist, a nutritionist, etc. You have to have someone in your corner, it's just too much for anyone to journey the biomedical model of health care solo.

Long_Illness0 karma

Thank you for sharing your story with us and with all the other readers. Community is so important. I am glad you have a rheumatologist and that they are going to work on optimizing your medications.

It can also be helpful to have integrative support for long illnesses like yours. If you have insurance now, i would suggest asking your rheumatologists what other referrals they can make to people in your community who might be able to help wtih some of your symptoms.

In our book we explain and discuss many of the different tools that traditional biomedical practitioners might not be familiar with or might not know how to get you access to. Some centers have an integrative medicine group or there might be one in your city. Most have remote visits and most are covered by insurance. Our book is a good place to start looking for other ideas.

There might not be a silver bullet, but there will be different things that you might find will improve things enough to make things a little better. I try to take things one day at a time myself (sometimes one minute at a time) and remind myself that sometimes things do help. Lean on your friends and your medical team when you are struggling, sometimes you find something that clicks and can help you make it through a difficult time.

I will be thinking of you as you are changing medications!

kat_jensen11 karma

Hi! What's the difference between long illness and chronic illness?

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.

lorazepamproblems8 karma

What does it mean if an EBV panel all four test results have very high results every single time you test? I also have high HHV-6 IgM/IgM and high CMV also all lights up positive. Been sickly since I was 14 when had air hunger causing vocal tics and was unfortunately immediately put on a very high dosage of Ativan to take indefinitely. But I was very sickly even before the Ativan. I went from running a 7 minute mile and 4 hour tennis matches to not being able to function much. Now I'm 40 and nearly bedbound with low stamina and POTS. Even though this happened very suddenly in high school I think the way in which it lingered and the anxiety diagnosis has made it so no one has ever seen what I've said all along was the real issue. I even said at the time that Ativan was like my breathing medicine. The only thing it did was make me care less that I wasn't able to breathe well. I never had a pediatrician/PCP etc. There was a lot of neglect. I went straight to a psychiatrist and the evaluation was very perfunctory and the response very authoritarian (was mocked for being afraid of taking Ativan—but my fears ended up being well founded—now told too medically unstable to taper). My PCP doesn't know what to make of my EBV results. He just repeats the tests every once in a while to see if they're still positive, and they always are. An EBV DNA test was done several times and is usually negative but was once at the very low end of reportable. Since the emergence of Long Covid and seeing people's stories on Twitter, I've noted what they are going through matches exactly what happened to me in high school 26 years ago, except that I was not on the Internet and very quickly funneled to psychiatry and benzos. But their description matches what happened to me--including the cognitive. In middle school I had read all of the high school curricula, and by 14 when this started I had to start reading out loud to myself to focus. I never thought it could be ADHD because I was older than normal when it started, but it was like that.

My doctor is always swamped and so I don't really get the attention I need. He once tried making a referral to infectious disease when he still had a nurse who could do the leg work, and I was told they rejected seeing me but was never told why. Whatever I do now I need to do of my own accord because I can't even been able get my glucose test strip prescriptions sent in for over a year--the office is just under water and he's near retirement age flying solo.

I've never even been told if my EBV results are significant. The testing was first done by another psychiatrist (I no longer see) who tested her entire panel and was selling supplements and I just happened to actually test positive. But the tests have been done many times since then from reputable labs. The reason I wonder if they're significant and at all explain my symptoms is that I know most people would have positive IgG, and I know there are certain disease where the IgM values are meaningless (like in HSV-2). I've asked my doctor if that's the case with this, and he said he doesn't know. It does fit with how sickly I am. I often have a temp. Often have a sore throat. Often flu like. And again the stamina issue along with POTS (I take a beta blocker).f

Edit: My ANA is also positive, but I can't remember which ones. But I know ANA can be positive in healthy people (but I am not healthy).

Long_Illness-7 karma

Thank you for sharing lorazepamproblems. We were motivated to write this book when we saw the parallels between long covid and illness that people we know, including one of the authors, experienced when being sick as a teenager. We address most of your questions in our book. Long illness is really to be a handbook, a reference for all the top symptoms and interventions that people who are dealing with a long illness need to have access to. It's a good jumping off point with lots of references to other materials and sources of material we recommend based on our experience as physicians, friends, moms, and patients ourselves.

While I can't interpret tests for you or give medical advice without being your physician, These days you can order medical tests over the internet and take them in the comfort of your own home. It is easy to get data about your body: DNA tests, stool microbiome, allergy tests. But what do the results actually mean? How do they affect your life?

We talk about testing in our book. Your practitioner should be able to explain why they are ordering a test and be able to interpret the results. If they are unable to interpret it, they need to send you to a specialist who can. That is why many tests are only ordered by certain specialists. When they get the results they have the expertise to go through your results and look at your symptoms and history and make decisions about what the test results mean.

Good luck to you and I hope you find someone who can go through your results with you. Message your practitioner and ask if you can have an appointment just to go through your results.

Fingers crossed. We are well aware of how challenging it is out there. That is why we wrote this book!

VediusPollio7 karma

Hello, can you offer any input, or new &/or alternative treatment options for hypothyroidism? Are thyroid conditions generally thought to be a symptom of something else, such as chronic inflammation, or some other autoimmune disease? I've heard that thyroid disorders are becoming more common. Other than iodine deficiencies, what else may be contributing to this?

Satansrainbowkitty8 karma

Not op but i didn't find out until a decade after hypothyroid diagnosis for me to find out I have tpo-ab antibodies, which is associated with hashimotos ... which is autoimmune.. I knew for years i have psoriasis but nothing came up on labwork. I haven't been tested in about a year but my tpoaB has been getting worse as I get older, especially since pregnancy (2018) AND covid.

Interestingly, my psoriasis symptoms now are under control as long as I avoid trigger foods and eat "gut healing" foods (i make my own chicken bone broth and eat raw garlic lol) when I have warning flares .... but the antibodies and the symptoms of hypothyroidism are getting worse. Tsh t3 t4 free t etc being in "normal range", but not necessarily normal "for me".

This doesn't answer your question at all and it's mostly word vomit i guess lol but I'm interested in an answer *besides check out the book.

VediusPollio3 karma

Hopefully this is more than just a book advertisement.. I may be more inclined to read it if it covers topics like this, amongst a few others.

I'm unsure if I've ever had a tpo test. I never get the full labs I want, just the usual basic checks. My TSH, t3, and t4 levels are 'normal' with the levo I'm currently taking, but I generally feel worse than before I was diagnosed. I have a strong feeling they're missing something, but can't be arsed to investigate closer (insurance limitations, I assume).

I'm tempted to get all the blood tests available from somewhere like Life Extension, but they're pricey. Wish I was rich enough to stay on top of full labs, scans, etc. Insurance isn't cutting it.

Long_Illness2 karma

Hi VediusPollio, Nah, we actually really care about all of you! Not a lie. You can read the book for free from your library or on the libby app if you don't want to or can't buy it. Also we do give aways on our instagram at longillness. If anyone really wants a copy of the book and can't swing it, send us a message (on instagram) and we will see what we can do to get you a copy.

Long_Illness2 karma

We are running out of time - send a message to longillness on instagram and will answer this there.

mietzekatze_1547 karma

What actualy helps people to get back on their feet and gives them the energy to life a normal life again? I know theres no cure. And i know about multimodal treatment yada yada. But what in your experience realy makes the biggest difference of all those things that can be done?!

Long_Illness2 karma

Running out of time on this AMA, but follow our instagram longillness to learn more about this. Some other people on this forum share their own experience that their journeys were a lot of trial and error and finding what works well for them for different situations. Continuing to stay tuned in to evidence based sources that will also answer questions about emerging treatments, whether that be us or others, is the key in keeping up to date.

For each of us who have improved in different ways, it usually was alot of trial and error! So just be patient and be open to the ideas of others. We published this book to get information out that we have found helpful for our patients and ourselves. You can get it for free at the library or online on libby if you are unable to access a library. Follow us on instagram for book giveaways. Information should be free (use your libraries!), but we also wrote a book with a publishing company so people can buy a copy for themselves if they want.

Ok-Feedback56046 karma

I was hit by this disease 1 year ago ...got healed but after that I still feel weakness whenever hit gym..is that post covid affects to inner body?

Long_Illness-1 karma

It could be. After an acute illness, you can have loss of muscle which can mean loss of strength and endurance, among other things. Some people who have long covid have a chronic inflammatory state, which can make regaining that strength you have more difficult. In our book Long Illness, we talk about how to optimize different areas of your lifestyle to help decrease fatigue and weakness. These can be helpful for people who are just trying to get enough energy to sit up in bed all the way to people who are trying to get back to their old performance routines.

Thanks for your question Ok-Feedback5604.

kookookachoobro7 karma

Is the inflammatory state detectable with tests or just based on symptoms?

Long_Illness2 karma

Symptoms are the best way to gauge whats going on. Our easily available tests are not there yet.

RogueViator6 karma

Is there a way to definitively confirm Ankylosing Spondylitis or any other Autoimmune Disorder? Any potential DDX?

I have had tests done for HLA-B27 (negative) and a bunch of other labs all coming back within acceptable limits. The reason for the labs is because I have a very bad spine since I was in my early 30s. For reference, an MRI done on my spine came back with:

"Severe degenerative changes in the cervical spine with multifocal moderate spinal canal and neural foraminal stenosis most prominent at C3-C6.

Overall moderate degenerative changes in the thoracic spine with mild flattening of the anterior cord at T7-T8 without cord signal change.

Diffuse calcification of posterior longitudinal ligament throughout the thoracic spine with multilevel spinal canal and neural foraminal stenosis at the midthoracic spine. Correlation with prior CT chest is suggestive of diffuse idiopathic skeletal hypertrophy with ossification of the posterior longitudinal ligament.


Extensive multilevel degenerative changes, multilevel disc herniation/sequestration and associated foraminal/lateral recess/canal stenosis."


My family doctor and pain specialist do not know what is causing this. Right now I walk bent over and cannot walk without pain in my back. Also, I cannot lie down for more than a minute without my right lower back near the hip becomes excruciatingly painful.

To date we have ruled out Cancer, Lupus, and the most recent tests were for Ankylosing Spondylitis which appear to be ruled out.

Long_Illness1 karma

DISCLAIMER! We should note that the information provided during this AMA is provided for educational and informational purposes only and does not constitute providing medical advice or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or other qualified health provider regarding a medical condition.

Thank you for your question, RogueViator. I am sorry you are going through this, it must be really frustrating for you. In our book Long Illness, we talk about how to build a medical team and find practitioners that can help you get answers that are helpful. However, sometimes there is not a clear active diagnosis, and what remains for some people is the damage left from old injury or disease. Specialists like rheumatologists or orthopedists can be helpful for your primary doctor to consult with on testing or treatment that might be helpful.

I would make an appointment with your primary doctor and let them know that you want to understand better what is going on and how you can move forward getting the help you need to reduce your pain. Check out our book, Long Illness, as the pain chapter can be helpful for getting a view of the big picture of how pain is assessed and treated.

nico_v236 karma

Have you read the work and research by the Director of the Pain Research Institute in London, Andreas Goebel PhD? What are your thoughts on the information summarized in this article: https://www.healthrising.org/blog/2022/09/30/long-covid-fibromyalgia-autoimmune/

What needs to happen and how long do you think it could take to get Pain Medicine caught up on the biology of nociplastic pain showing the autoimmunity is localized- not systemic- and very much real and worthy of pharmacological pain management? I have PASC, ME/CFS, Fibromyalgia, and chronic pain that is constant but am not taken seriously and cannot find care. Am often dismissed and dehumanized. We need to see a change in Pain Medicine and the answer is not found in CBT or refusal to try stronger medicines. Thank you

Long_Illness-2 karma

Thanks nico-v23 for your question. Your bring up lots of important topics we address directly in our book Long Illness!

First, I want to apologize that you have not found a care practitioner that has been able to help you. Sadly, we are way behind when it comes to understanding and managing pain. I think there are many people in Pain Medicine who are trying to change the field. There are many new treatments and innovations that are coming down the pipeline for different conditions and for pain itself that can help improve pain for some. Because it can be hard to treat pain, and many practitioners do not have training in how to understand or talk about pain, it can feel isolating and dehumanizing.

Recently trained practitioners are learning new approaches to pain. I poured alot into the pain chapter as a symptom management doctor (palliative care) that works with pain on a daily basis, I also live with chronic pain and am very aware of the shortcomings. Even as a well connected doctor at a major medical center, there is not adequate support and information. That is why we put our pain chapter front in center in our book as it is what brings many people into see us in the first place.

Would love what to hear what you think about the chapter and continue this conversation. Follow us on instagram u/longillness (longillness) and on our website longillness.com.

I have not read this particular review, but I am familiar with some of it. I will look it over and if you message me we can chat about it there!

Waterwoo5 karma

No disrespect, maybe you are different but uh... Wtf is going on at UCSF? You know if 4 years ago someone had asked me I would have assumed UCSF would be the absolute last place to subscribe to eugenics, yet it seems to be leading the pack.

Vinay Prasad, Monica Gahndi, Peter Hong -chin with this hot take https://abc7news.com/covid-19-coronavirus-endemic/13285505/

On top of this, he thinks yearly vaccines may only be needed by the most vulnerable and people over 65.

"We as a society have to be prepared for as much as 100,000 to 250,000 people a year dying of those vulnerable groups," Dr. Chin-Hong said. "But, in general for your average person, it will probably fizzle out."

What the hell is going on over there? It doesn't square with anything I know about California or SF, and I've lived in the bay area!

Long_Illness3 karma

Dr Jobson here: as a member of a "vulnerable group" this quote concerns me. We talk about ableism and disability justice in our book. I think it's a real issue we need to address in medicine. I think that the younger generation of physicians are thinking about these topics with more kindness. Hopefully they can teach the old guard that we need to be more thoughtful about how we talk/think about disability and the "vulnerable."

We all make mistakes that we can grow from. I encourage you to reach out to these physicians in the public eye who are making these comments. Start a dialog! We all have room to grow. :)

AnimeAdrianLive4 karma

Does long Covid go away on its own? I still have my cough after I got Covid in January and so far the basic stuff I have gotten from my gp doesn’t help. Like allergy medicine and gerd medicine. So now I’m wondering if I have long Covid since I was perfectly fine before then

Long_Illness-5 karma

Hi AnimeAdrianLive,

Thanks for your question. That's a hard question, the truth is because long covid is new, we don't have good data on whose symptoms will go away and whose will linger. There is alot of different data out there, but it is preliminary and long covid might look different in people who received different vaccines (ex. the bivalent recipients might have shorter durations of long covid symptoms). We just don't know for certain.

For you, it sounds like you are still having some symptoms. Check out our book Long Illness for tips and tricks of how to talk to your health care practitioners about your symptoms and to learn more about them yourself. Only your health care practitioner can diagnose you with long covid, but you should keep seeking out help for your symptoms! Our book really can help.

somewhere12--3 karma

What is the true cause of Glomerulonephritis? I mean I understand that the kidneys are inflamed, but why? (My Nephrologist calls it "Immune Complex Glomerulonephritis")

Long_Illness1 karma

Thank you somewhere12-- for your question.
Causes of certain types of glomerular disease are better understood than others. Glomerulonephritis is when the part of your kidney that filters blood (called the glomerulus or glomeruli) get inflamed or injured. Infections (ex. strep throat, HIV, HBV, HCV), autoimmune disease (ex. lupus, IgA, anti-GBM), vasculitis (ex.PAN, GPA), and sclerosis (ex. high blood pressure, diabetes) can cause the disease. A biopsy of the kidney is taken and a pathologist will stain and interpret the biopsy. This information, along with some blood and urine tests, can help identify an underlying cause or causes of your disease. However, for some people, the disease is called idiopathic (which means, don’t know the cause or arises sporadically).
When immune complexes are seen, we mostly think about autoimmune disease, infections, and monoclonal gammopathies. Your doctor likely ran many blood tests, which will allow them to know what probably did not cause the disease, but they might not be able to tell you exactly what did cause it. I hope this helps!

DigaLaVerdad2 karma

Is it common to start experiencing the symptoms of long COVID MONTHS AFTER recovering from an acute phase?

Long_Illness1 karma

It is not common, but it can happen.

B0B0B0B0B0B02 karma

What are some examples of natural remedies or alternative therapies for managing chronic illness and how will I figure out which ones to use?

Long_Illness2 karma

DISCLAIMER! We should note that the information provided during this AMA is

provided for educational and informational purposes only

and does

not constitute providing medical advice or professional services.

The information provided should not be used for diagnosing or treating a health problem or disease, and those

seeking personal medical advice should consult with a licensed physician.

Always seek the advice of your doctor or other qualified health provider regarding a medical condition.

Thank you for joining the AMA. This is a great question. We think that care is best when we weave biomedicine with evidence- based natural products. In our book, we have a chapter on how to pick natural products and recommendations throughout on the most common natural products used for various symptoms.

For example, natural products like Curcumin and Quercetin are often used broadly for their anti-inflammatory effects. We like resources such as ConsumerLabs to help pick supplements. We also want to make sure that supplements have at least a GMP (Good Manufacturing Practice) certification to ensure that the product has an additional layer of quality control.

Thanks for the question and for joining us.

HiThisIsMichael2 karma

What can we do to reduce chronic inflammation in our lives?

Long_Illness1 karma

Hi Michael,

Generally speaking, we recommend an anti-inflammatory diet (or a diet that is tailored to your body's needs), hydration, movement, mindfulness, and stress reduction (which often includes upgrading your mental health support.)

This is something we address at length in our book, Long Illness, which has a long section on reducing inflammation.

Disastrous-Bad-37091 karma

When will ME/CFS be solved and recognised by so called medical “professionals” as a cruel, debilitating illness that is physiological in nature and not gaslight patients into going to a Psychiatrist when no patient has been cured with treatments as therapy or psychiatric medications? When will we get a cure and compensation for all the years of suffering?

Long_Illness-1 karma

Hi Disastrous-Bad-3709! Thanks for your comment.

100% hear you. There are so many diseases that have not been given their due. This book is not only for people who have long illnesses, but also for practitioners to broaden their horizons. Historically, this is nothing new, with the medical establishment rejecting ideas about new diseases. I think the ME/CFS community has done an amazing job advocating for itself and getting major recognition and poorly done research debunked.

It's not just ME/CFS patients though, many people with long illnesses get treated like this, and it needs to end. I've worked alongside many newer physicians and I think a change is already underway.

Thank you for sharing your frustrations! Dr J

No_Selection_2631 karma

Hi, and thanks for doing this AMA! Are individuals with long illnesses more likely to experience depression and anxiety? Do you have any strategies for keeping up with your mental health and well being when living with a long illness?

Long_Illness0 karma

Thank you for your question. There are so many reasons why mental health can take a hit in long illness. We see a higher prevalence of depression and anxiety in this population. Depression and anxiety are a natural response to problems like inflammation, pain, and brain fog (amongst others.) But, this doesn't mean that there aren't ways to help.

In our book, we expose our readers to exercises from many schools of psychotherapy: Acceptance Commitment Therapy, Internal Family Systems, Dialectical Behavioral Therapy, and Cognitive Behavioral Therapy. This way, people can get a sense of different options for therapy and can explore self-healing if they do not have access to a psychotherapist. We also have journaling prompts, mindfulness practices, and even a narrative medicine chapter to explore your story. In addition, we review what integrative treatment for depression and anxiety can look like, mixing biomedicine with natural products, lifestyle medicine, and traditional medicine.

Long_Illness1 karma

Hi all! Our time here is about to end. I encourage to reach out to us with your unanswered questions on instagram. longillness.

Thanks for all your great comments and questions and have a great day.

DredgenPoof1 karma

Hi and thanks for doing this AMA! Do you see similarities between long COVID and other known auto-inflammatory conditions (such as Still’s disease)?

Long_Illness0 karma

Thanks for the question DredgenPoof!

Yes! That's actually what inspired us to write this book. Most long illnesses have similar symptoms and courses. The advice and management for people with many types of illness is very similar for most diagnoses (or for those without a diagnosis yet). In our book Long Illness, we talk these similarities.

From the symptoms that people experience, to the underlying root causes of disease, there more similarities than differences for most diagnoses.

SpaceElevatorMusic0 karma

Hello, and thanks for doing this AMA.

Are there good estimates on how many people have long Covid but either 1) don't know it or 2) suspect it but remain undiagnosed worldwide?

Long_Illness0 karma

Thank you for your question! Excited to doing this AMA! The conservative
estimate is that 10% of people who had a covid-19 infection have long
covid which is at least 65 million people worldwide. There are probably many people who never knew they had a covid infection who have long covid. Most people with
long covid have not been diagnosed formally by a doctor. Our book can help readers examine their symptoms and talk to their health care practitioners about how to sort out what is underlying their issues.

Long_Illness-1 karma

Hi Everyone! Dr. Morgan and I have patients to see now! But we will be checking back in on this later tonight to answer the last few questions.

Please follow us on instagram longillness or sign up for our mailing list on our website longillness.com to continue the conversation. Appreciate all of you taking the time to put questions here. We will answer them all ASAP! Keep em coming :)