Was in remission 7 years, then mom died, ME now back and severe

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Just as the title says really - it came as a real shock when I woke up three weeks after mom died to find all my ME symptoms had returned after more than seven years of complete remission.

It’s been two months since then and I have rapidly declined despite pacing. I am now severe already (housebound and mostly bedbound).

If anyone has any suggestions on how to balance grieving plus ME, or if anyone has any suggestions as to what might have gone wrong in my body for this illness to come back again, I’d be really grateful. Thank you
 

Wayne

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If anyone has any suggestions on how to balance grieving plus ME, or if anyone has any suggestions as to what might have gone wrong in my body for this illness to come back again, I’d be really grateful. Thank you
Hi @POTS -- First of all, my condolences on you losing your mother so recently. And then to have ME/CFS come back in full force 3 weeks later must feel pretty devastating.

I'd say the good news is: You'd been able to stay in remission for seven years. That's quite remarkable, and would seem to indicate you know how to maintain good health for yourself. So the solution for you seems to be--as you alluded to--how to "balance grieving...".

I've long been of the belief that regularly experiencing a deep calm is essential to making progress in improving our health. There's so many things that can be done on various levels: Physical, emotional, mental, psychological, spiritual..."

If you'd be interested in a unique (and non-demoninational) spiritual technique that might be helpful, check out the links in my signature. They describe how to sing a simple spiritual mantra to help bring a deep calm into all levels.

Take good care as you navigate this difficult time in your life...
 

Mary

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@POTS - I'm sorry for your loss and sorry your ME has returned. I know that my ability to cope with stress has greatly diminished since the onset of ME/CFS.

I recently learned about a very simple technique called the Butterfly Hug which activates the parasympathetic nervous system (rest and relax). It only takes a few minutes, can be done by anyone almost anywhere - it's helping me with sleep. It might help regulate your stress hormones - the video is very short, 37 seconds:

 
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I've long been of the belief that regularly experiencing a deep calm is essential to making progress in improving our health. There's so many things that can be done on various levels: Physical, emotional, mental, psychological, spiritual..."

If you'd be interested in a unique (and non-demoninational) spiritual technique that might be helpful, check out the links in my signature. They describe how to sing a simple spiritual mantra to help bring a deep calm into all levels.
Hi Wayne, thank you for your kind reply. What you say about a deep calm really resonates with me, as I’ve been wondering if the ME has come back because my sympathetic/parasympathetic nervous system is so out of balance now I’m grieving the most important relationship in my life (I am in my 20s so the loss was quite unexpected).

I will take a look at your technique - thank you.
 
Messages
5
@POTS - I'm sorry for your loss and sorry your ME has returned. I know that my ability to cope with stress has greatly diminished since the onset of ME/CFS.

I recently learned about a very simple technique called the Butterfly Hug which activates the parasympathetic nervous system (rest and relax). It only takes a few minutes, can be done by anyone almost anywhere - it's helping me with sleep. It might help regulate your stress hormones - the video is very short, 37 seconds:

Hi Mary, thank you for your reply. Coincidentally I was reading the thread about the butterfly hug just now! I definitely think my nervous system is out of whack which either caused the relapse or is a major factor in worsening it.
 

Wayne

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Hi again :) -- Since you're exploring Mary's butterfly hug, I suspect you'd be open to an interesting video. The young woman has some pretty fascinating things to say about brain function, and demonstrates a simple technique that she says can improve brain function significantly within a matter of weeks. (I often notice subtle and relaxing shifts while I'm doing them).

Balancing the Cortices Technique

I do the technique every single day (along with a few other energy balancing techniques). -- Also, regarding the HU Song I mentioned earlier. I've done that almost every day since I was in my 20's. Discovering it, and incorporating it into my daily routines literally changed the course of my life. It's helped me greatly in some of my times of grieving.
 
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Wayne

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Qi Gong

A good friend of mine has been a long-time practitioner of Qi Gong. I recently became enthusiastic by its potential for me, and he's going to give me some "personalized" Qi Gong sessions soon. I just did a query on ChatGPT, and came up with the following. It's kind of getting me motivated to start those training sessions with my friend soon!

I once watched a video with an amazing account of how a woman recovered from debilitating ME/CFS by doing daily Qi Gong routines, as long as 2 hrs/day. Was wondering if you could find any accounts at all of people saying they've recovered (or improved) from ME/CFS using Qi Gong, or some other similar movement therapy.
Yes, there are several accounts of individuals who have experienced significant improvements—or even full recovery—from ME/CFS through the practice of Qigong and similar movement therapies. Here are some notable examples:​

🌿 Personal Recovery Stories Involving Qigong​

  1. Pauline’s Journey (Be Well Qigong)
    After over a decade of disabling ME/CFS and digestive issues, Pauline discovered Qigong in 2022. Incorporating this practice into her routine helped her overcome a healing plateau, leading to increased strength and vitality. She emphasizes the importance of nervous system regulation and self-kindness in her recovery.
  2. Anne’s Recovery from Long COVID & ME/CFS
    Anne, a Qigong teacher, utilized silent Qigong—focusing on breath and sound—to calm her nervous system. Combined with Traditional Chinese Medicine, psychotherapy, and lifestyle changes, she achieved full recovery. Her story is shared in a video interview (in German with subtitles).
  3. Kim Knight’s Experience
    Between 1997 and 2006, Kim reversed multiple chronic conditions, including ME/CFS, using Qigong and other natural health approaches. She trained extensively in various Qigong systems and now teaches others.
  4. Graham Stoney’s Practice
    Graham found that daily Qigong routines, especially in the mornings, helped him manage Chronic Fatigue Syndrome and sleep apnea. He shares his favorite routines and experiences on his blog.
  5. Student Experience with Taiji Qigong
    A student diagnosed with CFS in 2009 reported significant improvements through Taiji Qigong practice. She transitioned from being housebound to regaining mobility and reducing symptoms like fatigue and pain.

🧘‍♀️ Insights on Qigong for ME/CFS​

Qigong is characterized by slow, gentle movements that integrate breath and intention, making it suitable for individuals with ME/CFS who may not tolerate more strenuous exercise. Practices often focus on strengthening the kidneys and adrenals, which is beneficial given the adrenal exhaustion commonly associated with ME/CFS. Health Rising
A systematic review published in 2024 indicates that Qigong and Tai Chi show promise in improving ME/CFS symptom severity and frequency, although more research is needed. earthbalance
 
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linusbert

Senior Member
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If anyone has any suggestions on how to balance grieving plus ME, or if anyone has any suggestions as to what might have gone wrong in my body for this illness to come back again, I’d be really grateful. Thank you
sounds like your adrenal glands got overstressed. high dose vitamin C, pantethine (b5) and sodium might help. even low dose cortisol like hydrocortisol.
it works even better when you do this as soon as the stress comes in.

my condolences. may God give you the strength to overcome the suffering and grief and assist you in your grieving process. 🙏
 

Wayne

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Ashland, Oregon
even low dose cortisol like hydrocortisol

Just to mention, this is the same as low-dose hydrocortisone, which has quite a long scientific background. It's been around since the 1950's, but is still not understood by most health care practitioners. There's quite a bit of information on that on this forum. I myself have been on it for 25-some years, and have had nothing but good results from it.
 
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Wayne

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what dose of hydrocortisone in mg is low dose actually?

Hi @linusbert -- I did a fairly lengthy writeup on it in the past. I'll paste it in the link below. The short answer is "generally", 20-30 mg./day. Some people don't need that much, so it needs to be tailored to each individual's needs.

I did extensive research on adrenal insufficiency over 20 years ago now, relying primarily on a book written by William Jeffries, M.D. He made a career out of researching low-dose hydrocortisone supplementation, and was able to show how it improved a wide variety of health issues. I still take 20-25 mg/day of Cortef after all these years, and am not aware of any adverse effects.

Here's a quick review of some of my baseline understanding:

The body normally makes approximately 40 mg of cortisol/day. Most steroid medications such as Prednisone are altered and revved up versions of the body's own cortisol molecular structure. Every mg. of those medications is roughly equivalent to about 4x the body's natural cortisol. So if you're given a dose of lets say 50 mg. prednisone, that would be equivalent to 200 mg. of natural cortisol. That's a lot, roughly 5x more than your body produces in a day.

If you continue taking that for too long, the body's adrenal glands will quit producing cortisol altogether. However, if you take less than 40 mg.of bioidentical hydrocortisone, (called low-dose hydrocortisone therapy), the adrenal glands will not shut down, but "may" reduce cortisol output depending on the needs of the body. I myself have been doing low-dose hydrocortisone (10-20 mg/day) for many years, with no problems.

The body normally responds to any kind of injury by increasing its normal levels of cortisol to facilitate the healing process. My best guess is it's rarely the equivalent of 200 mg, but I could be wrong. The point I'm getting to however, is that I believe it's safer to do relatively low-dose bioidentical cortisol than to do the artificially created revved up versions. BTW, each of those steroidal medications has a different molecular structure, not because they're superior, but because it allows pharma companies to have their own particular patent.

How much bioidentical cortisol to take? Based on my experiences, if I feel my body needs some extra oomph, I will increase my normal low-dose hydrocortisone. I've experimented a lot, and can easily take a total of 30-40 mg with good results. On a few occasions, I've taken 70-80 mg. for 3-5 days, again with good results (and no ill effects). It's a fair amount, but it appears to be less than normal prednisone prescriptions, and almost assuredly much safer. It also feels like it's in line with what the body might do naturally to help a healing process.

I have my own prescription of hydrocortisone (called Cortef). However, it's a relatively benign "drug" that can be purchased from online pharmacies without a prescription (at least it used to be available). If I was in a position where I was seriously contemplating temporarily increasing my cortisol levels, I would opt for the bioidentical cortisol over the souped up pharmaceutical versions. It would give me a lot more control, and the risks of side effects would be much less.

One indication that I've reached my limit on how much to take is when my face starts to look flushed. Once I've reached that point, I always stop taking any more for the day. I rarely do more than 25 mg in a single day, and it is extremely rare that I take over 50 mg. But I know that if I absolutely positively have to get through a day of intense activity, I can do it. Taking this much for a few days is not going to be problematic. Only if it starts running into weeks and more does it cause significant imbalances.

You might find the following post interesting. In the lengthy post, Dr. Thomas Levy describes how he discovered while recovering from COVID that he had adrenal insufficiency, and how supplementation did wonders for his health. To the point where he felt healthier after COVID than he had for many years prior to getting COVID.

Dr. Thomas Levy -- How COVID Helped Me Regain Good Health

 
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