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Is there a healing process in ME/CFS?

TrixieStix

Senior Member
Messages
539
So heres a question that I am interested in were symptoms much worse in the begining then subside over time.

Like have the weird neuro ones sunstantial improved or gone away like the twitching, blurred vision, jerks, etc?
I developesd vision problems, uncontrolled jerking of my limbs & head, and a 20 hour long episode of lower facial paralysis during a major PEM crash 6 months ago. It took a few months for the jerking to subside but the vision issues have remained constant.
 
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mermaid

Senior Member
Messages
714
Location
UK
I am cautiously optimistic that I am improving after being ill for over 10 years, but in my case it was a long slow decline, and I was never severely ill (probably moderate at my worst). About 7 years ago (when I was mildly affected and working part time), after an operation, followed by whooping cough, I had a very bad setback which I have only just started to recover from.

This year I have begun to improve, even though 9 weeks ago I had an eye operation (which gave me a temporary set back). There is no magic wand for my improvement - I have a good diet, take a cocktail of supplements, and see a herbalist (for last 2 years). I put my improvement down principally to some tests done to pinpoint issues, a change in my thyroid meds, my herbalist's treatment and a very simplified approach to methylation. I am retired now so can rest better if I do get a setback and have less stress.

Re the neuro symptoms.....I have had chronic migraine aura for a long time. My herbalist is just trying me on Feverfew, which (fingers crossed) appears to be working for me!

Interestingly my balance has improved I just noticed recently!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think one thing that helped me heal somewhat in the first few years of my illness was seeing a naturopath on a regular basis to get chronic sinusitis under control. Once the sinusitis was under control we moved on to other ways to strengthen my immune system. I think I saw her every ten days for a year or two.

If one has the means, I would recommend seeing a naturopath in the first years of one's illness to get out of the worst symptoms that occur early on.

I was studying at a gov accrediated naturopathy college naturopathy full time when I first got ME so had access to so many different naturopaths for advice etc, for me it just didnt do a thing. I spent 2-3 years trialing western herbal med herbs (some chinese herbal meds) and "normal" vitamins etc .. I didnt know about methylation or "active" forms of vitamins so those forms werent tried in my early ME years (its a pity as I did need those due to the MTHFR mutation).

I was very healthy before I got ME, once sick boosting my immune system with herbs using natural antibiotics etc etc didnt help but yeah I certainly do think its worth a go for most. (prescription antibiotics, perscription antifungals have done nothing for my ME either though did cure my ongoing thrush). Its hard not really knowing what is the whole cause of our whole illness.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
So heres a question that I am interested in were symptoms much worse in the begining then subside over time.

Like have the weird neuro ones sunstantial imporved or gone away like the twitching, blurred vision, jerks, etc?

All of those neuro ones can improve over time except Im unsure on the dysautonomia stuff and if damage there can come good.

If anyone here has had severe dysautonomia which showed up on tests (eg swinging hypo with the hyper OI) with their ME but have had it go without needing to take treatment for it anymore, please send me a pm as I really want to know if we can heal from severely damaged autonomic system which cant regulate properly anymore.

Two who didnt have ME but had their OI just like mine is but no other medical issues, both of those ended up with heart failure in their 40s/50s and of cause heart failure isnt cureable at that point. So this OI symptom at this severity worries me a lot, it has potential to cause permanent damage.
.......

even my bowel peristalis which was hardly working has managed to improve after over a year where I'd been having to use daily enemas cause it wasnt working (it healed after another year taking epsom salts by mouth to encourage bowel movement etc). Anyway, all my neuro symptoms (except my brain but Im thinking I may be getting Alzheizers with that? as I have a high risk of that). Have been able to recover.

My brain memory was first injured by severe mono (I had dangerously high fevers during it) and though I didnt get ME for another 10 years my memory was never the same. On the other hand I did recover from when my brain was more severe with the ME and regained ability to speak etc.
 
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Justin30

Senior Member
Messages
1,065
Two who didnt have ME but had their OI just like mine is but no other medical issues, both of those ended up with heart failure in their 40s/50s and of cause heart failure isnt cureable at that point. So this OI symptom at this severity worries me a lot, it has potential to cause permanent damage.

Hi,

Thanks for the reply what kind of OI was it POTS or NMH or the autoimmune type?
 

TrixieStix

Senior Member
Messages
539
I was studying at a gov accrediated naturopathy college naturopathy full time when I first got ME so had access to so many different naturopaths for advice etc, for me it just didnt do a thing.

I think that the "Placebo Effect" isn't discussed/considered nearly enough (if at all) by patients when it comes to complementary and alternative medicine (CAM), homeopathy, acupuncture, etc. I myself believe those who "benefit" from such things are almost certainly experiencing a placebo effect. Otherwise studies and clinical trials would have by now been able to prove such things work, and they have not. While the placebo effect is real and can result in benefit to some people at what cost does this come? How much money is spent on such things by sick patients unable to really afford it, out of desperation? This seems to be especially relevant to ME/CFS.

article below: "Is Harnessing the Power of Placebo Worthwhile to Treat Anything" (discusses CAM)

https://www.sciencebasedmedicine.or...ower-of-placebo-worthwhile-to-treat-anything/
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think that the "Placebo Effect" isn't discussed/considered nearly enough (if at all) by patients when it comes to complementary and alternative medicine (CAM), homeopathy, acupuncture, etc. I myself believe those who "benefit" from such things are almost certainly experiencing a placebo effect.

Placebo effects only work for a short while and not usually a permanent thing, the symptoms come back with that. Its actually too been shown in a study that ME/CFS patients dont experience as much placebo effects as the general population (we often carry the expectation that something wont work so may in fact be giving things less of a chance to see when something is a little).

Otherwise studies and clinical trials would have by now been able to prove such things work, and they have not.

Many herbs have been studied and have been shown to help some things (of cause not in ME/CFS studies thou when nothing at all whether pharma or otherwise doesnt seem to show much impact). Herbs and alternative meds unfortunately havent got the big drug companies trying to study them so less research goes on in these areas, this doesnt mean the dont work (and big drug companies are often biased too in their research, they may test their meds multiple times but only then publish the positve studies).

Homoepathy is very very hard to study as it doesnt work like normal medicine at all as in you have this one symptom and hence you try to use this for it, it works nothing like that. The best practioners in this take a very individual approach and every person who sees them is treated very individually.. two people showing the same symptoms may be treated very differently based on their habits and personalities.

Unfortunately in studies they researchers often arent good homoepathic practioners in this field and not working in this very individual kind of manner. The researchers may store the homoepathic meds wrong (they arent meant to be put close to strong scents, care needs to be taken with them) or do other things which can cause poor study results. In my country Homoepathic medicine is a 4 year full time course to get gov accrediated in it.

I went to a top homoepathic practioner (he had clients flying from other side of world to see him as he had such a good repretation). He actually with one homopathic treatment dose fixed a problem I had with constantly peeing. I was waking up 6-7 times during night to pee and peeing heaps during day. I'd had that problem for quite a while and he fixed it same day as I took this. Its hard to say that was in the mind as it was waking me up multiple times during the nights before this.

When this issue started to come back many months later, I took another dose and had it go away again and havent had the issue back again.

Unfortuantely homeopathic meds never helped anything else of my ME though we tried.

I had a pet rabbit who was had accident who's leg went hard, swivelled and black, it looked completely dead as he'd got twine tangled around it which cut off his circulation and it took me days to realise why he wasnt moving from a section of his cage. Vet would of chopped his leg off, that homopath actually treated him and this leg I was sure was dead actually came back to life.

ANother time the rabbit ripped a huge hole in himself on a piece of wire and his whole body if you put pressure on his body even on his other side, it made it ouze pus, lots of it from the hole, it was a dwaft rabbit and the hole in his side was bigger then a penny and you could see his insides through like membrane. Once again homeopathic med from that homopath fixed my rabbit, no stitches or anything, his whole infected body healed along with the hole within 5-7 days. If I had taken this rabbit to the vet, I think there would of been a chance he would of been put down.

Animals do not understand placebo affects.

and there was my daughter who after having surgery 17-19 times over 2-3 years and doctors giving up on the issue fixing and saying she'd continue to need surgery every 6-8 weeks (she had growths which kept blocking her airways with wouldnt stop happening so her life kept being at risk). I took her out of desperation to an accupuncturist, he fixed her ONE treatment. No more surgery!!

Another time daughter started declining very badly after one of her surgery, she went limp, went into high fever which they were struggling to bring down (the meds werent working, they were about to try putting her into a cool bath), she was almost unconscious

I actually picked her out of the hospital bed and removed her from the hospital (snuck her out as I knew they was no way they would of allowed me to take her out of hospital in her bad state) and drove her straight to a good naturopath (herbalist) I knew 10mins away who gave her a very strong herbal extract. (this shows my trust in natural therapies as its really aided my family so much on so many occassions when things start to fail at hospital that is where I head) She was up and running around in 30-45mins, completely recovered.

(Hospital was in shock Id taken daughter from there, I called them and got my daughter to speak to them so they could tell she was back to normal consciousness etc and not going in and out).

Another time when she wasnt doing well I brought some natural therapists into the hospital and she had such an amazing recovery that the hospital nurses and drs wanted to know what I did. More and more of them showed up at her hospital room asking us how we'd done it and how she was so good (on that occassion it was what is called a reiki bake for 30mins, I had several reiki channels sending her healing along with hands on healing given to her in the room).

Reiki does nothing at all for my ME/CFS though Ive had miracle healings with it with other things including a time when I cut my finger to the bone which both my father and I saw.
Few minutes of reiki while holding that finger very tight to try to stop the bleeding as we were getting ready to leave for the hospital for me to have stitches done. The cut disappeared. My father and me just were staring at my finger wondering how on earth that happened, not even a mark or scar was left.

I had something wrong with a knee and was limping on and off for over a year. I got recommended a tissue salt. That fixed my knee. A year or so later the problem started return, taking tissue salts fixed it again.

So amazing results can be achieved through natural therapies if you have a good therapist who really knows what they are doing (usually 4 years full time study at a recognised naturopathy/herbal med school for minimum training). I personally will not go to any naturopath or alternative healer unless Ive had good recommendations fo them, its like drs, there are good ones and bad ones and the occassional exceptional ones.

I thought 6-7 out of the 8 chiropractors I saw were crap, I dont like to keep going back without feeling a benefit. I ended up finding one which fixed my constant ME/CFS dizziness in just one treatment. So now I just get dizzy on occassions eg when standing instead of constantly. (I'd just remembered that a chiro fixed that, my neck had felt fine but it turned out it was my neck causing me constant dizziness and making ME/CFS symptom worst).

So unfortunate that ME/CFS is so very hard to fix. I tried A LOT of natural therapies, I even tried weekly reflexology for over a year, that didnt help my ME/CFS at all or seem to improve anything else (though all the sore points in my feet went).
 
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TrixieStix

Senior Member
Messages
539
Many herbs have been studied and have been shown to help some things (of cause not in ME/CFS studies thou when nothing at all whether pharma or otherwise doesnt seem to show much impact). Herbs and alternative meds unfortunately havent got the big drug companies trying to study them so less research goes on in these areas, this doesnt mean the dont work (and big drug companies are often biased too in their research, they may test their meds multiple times but only then publish the positve studies).

Yes there are many herbs, plant compounds, animal compounds, fungi, bacteria, etc that do indeed have medicinal uses. On this we agree. Some used in their natural state and others used to create pharmaceutical drugs.
 

mermaid

Senior Member
Messages
714
Location
UK
Yes there are many herbs, plant compounds, animal compounds, fungi, bacteria, etc that do indeed have medicinal uses. On this we agree. Some used in their natural state and others used to create pharmaceutical drugs.
I have just come back from the Dr with the results of my latest Full Blood Count test with all showing now within range. I have had this done at least annually over the past 5 years or so, when I knew that my immune system was really a problem (sore throats and viruses every few weeks).

In the past 2 years I have been to the herbalist and taken her herbal mixes consistently, and the results have shifted. I used to have low lymphocytes, and low platelets in particular, and a few other things like monocytes, eosophils, to do with the immune system were wonky. Now all within the normal range! And no constant sore throats and viruses!
 
Messages
66
Reiki does nothing at all for my ME/CFS though Ive had miracle healings with it with other things including a time when I cut my finger to the bone which both my father and I saw.
Few minutes of reiki while holding that finger very tight to try to stop the bleeding as we were getting ready to leave for the hospital for me to have stitches done. The cut disappeared. My father and me just were staring at my finger wondering how on earth that happened, not even a mark or scar was left.

As a reiki master I've done some pretty crazy things. But the best person I know at it managed to mostly fix me for about ten minutes before everything came creeping back.

Might be an issue with knowing what to target. With an obvious injury it's easy to feel a sense of urgency and know which body processes to inject energy into. But with ME/CFS, it's mysterious. She just told me there seemed to be a problem with my myelin and that there was a section in the brain that wasn't happy. But she couldn't do much about it.
 

purrsian

Senior Member
Messages
344
I like to think about ME as a disease like diabetes. One is never "cured" of diabetes, but with correct treatment and lifestyle changes, one can live a normal symptom-free life where the disease is managed. I decided to consider my illness like this, as I was tired of constant hoping and then getting let down whenever I'd try a new treatment. This way, I am thankful of any improvements that occur but not blindsided if I suddenly go downhill again.

I agree with what some others have said here, that you can provide your body with optimal conditions to aid healing. We are sensitive to many things in life, so any change that makes things even a bit easier for our bodies to handle is a positive. I try to think of lifestyle change not as "fixing" anything, but as making it easier to my body to deal with life, enabling it to work more efficiently and thus focus more on healing where possible.

That being said, someone with diabetes would never be symptom free if they required drug treatment but weren't getting it, regardless of lifestyle changes. Similarly, we can't fully heal if there is something so dysfunctional that it requires a specific treatment like that. But that is very difficult to find since we don't know the exact dysfunction that is causing all of our problems. Recent research looks promising, but in the meantime, we can at least look after ourselves as much as possible to give our bodies the best chance to function more efficiently. I have acupuncture weekly and don't expect it will ever actually cure me, but it helps my body recuperate a little faster than it does on it's own.
 

frog_in_the_fog

Test Subject
Messages
253
Location
California
I like to think about ME as a disease like diabetes. One is never "cured" of diabetes, but with correct treatment and lifestyle changes, one can live a normal symptom-free life where the disease is managed. I decided to consider my illness like this, as I was tired of constant hoping and then getting let down whenever I'd try a new treatment. This way, I am thankful of any improvements that occur but not blindsided if I suddenly go downhill again.
I kind of feel the same way. Until there is a clear path to a cure, keeping things under control is the modus vivendi.
 

Woolie

Senior Member
Messages
3,263
I think in the first few years there is a healing process, one that enabled me to work part-time from home for a number of years, but nothing like the full-time job working on my feet I'd done previously.

Unfortunately, I've lost any gains I've made. Even though I have fewer flu-like symptoms now (no sore throats, fever, etc.), I'm much more fatigued and am now housebound. Five years ago I was driving 2-3,000 miles a year. Now I'm driving 300 miles/year and having prepared meals delivered to my home. I wouldn't have needed that five years ago.

I didn't see this recent decline coming. I want everyone to be aware of it. It happened about 20 years into my illness.
@CFS_for_19_years, my story is almost exactly the same as yours. I also had a remission about four years into the illness, but then over a period of around 10 years, just gradually lost those gains I'd made. My symptoms have also evolved in the same way as yours, from much more flu-like in the beginning to more fatigue, headaches and PEM now.
 

mermaid

Senior Member
Messages
714
Location
UK
I like to think about ME as a disease like diabetes. One is never "cured" of diabetes, but with correct treatment and lifestyle changes, one can live a normal symptom-free life where the disease is managed. I decided to consider my illness like this, as I was tired of constant hoping and then getting let down whenever I'd try a new treatment. This way, I am thankful of any improvements that occur but not blindsided if I suddenly go downhill again.

I agree with what some others have said here, that you can provide your body with optimal conditions to aid healing. We are sensitive to many things in life, so any change that makes things even a bit easier for our bodies to handle is a positive. I try to think of lifestyle change not as "fixing" anything, but as making it easier to my body to deal with life, enabling it to work more efficiently and thus focus more on healing where possible.

That being said, someone with diabetes would never be symptom free if they required drug treatment but weren't getting it, regardless of lifestyle changes. Similarly, we can't fully heal if there is something so dysfunctional that it requires a specific treatment like that. But that is very difficult to find since we don't know the exact dysfunction that is causing all of our problems. Recent research looks promising, but in the meantime, we can at least look after ourselves as much as possible to give our bodies the best chance to function more efficiently. I have acupuncture weekly and don't expect it will ever actually cure me, but it helps my body recuperate a little faster than it does on it's own.
Yes, I agree, and as I have Hypothyroidism (and have had for 20 years +) I will never be completely free of problems.

It doesn't help that the health authority here (known as the CCG which is a local commissioning group) have decided to take away the medication that I use and have taken for 4 years to improve my condition (T3) and leave me with one that doesn't work for me (T4). To say this is wrong, doesn't begin to describe what I feel. I am very upset about it. I see an endocrinologist next week to discuss it, but I don't hold out much hope.

After fighting so long for my health I am not going to let this happen, but being forced to fund my ONLY medication from abroad, doesn't feel morally right to me. Our country is going down the tube in so many ways.
 

purrsian

Senior Member
Messages
344
Yes, I agree, and as I have Hypothyroidism (and have had for 20 years +) I will never be completely free of problems.

It doesn't help that the health authority here (known as the CCG which is a local commissioning group) have decided to take away the medication that I use and have taken for 4 years to improve my condition (T3) and leave me with one that doesn't work for me (T4). To say this is wrong, doesn't begin to describe what I feel. I am very upset about it. I see an endocrinologist next week to discuss it, but I don't hold out much hope.

After fighting so long for my health I am not going to let this happen, but being forced to fund my ONLY medication from abroad, doesn't feel morally right to me. Our country is going down the tube in so many ways.
I'm so sorry that's happening to you, your doctor should be the one to say what medications you can and can't have as a health authority doesn't know your needs. At least these days you can buy things internationally. You shouldn't have to, but at least there is the option. It would be nice if we could all do jedi mind tricks... "you will give me my T3" "I will give you your T3" ;)
 

mermaid

Senior Member
Messages
714
Location
UK
I'm so sorry that's happening to you, your doctor should be the one to say what medications you can and can't have as a health authority doesn't know your needs. At least these days you can buy things internationally. You shouldn't have to, but at least there is the option. It would be nice if we could all do jedi mind tricks... "you will give me my T3" "I will give you your T3" ;)
Actually, @purrsian since I wrote this there has been a development. I had a call last night from my GP who had a letter from the endocrinologist I am due to see next week. I am very lucky that I have got referred to an endo who is sympathetic to T3 users and who has actually done some useful research into it.

It appears that he is not going to change his approach re T3, and wants patients who need it to keep receiving it. He has also written to the CCG who are the body who are telling GP's not to prescribe it, and it seems that they are now backtracking as long as an endo has approved it. So...... I have to go and see this endo next week, but am keeping fingers crossed that as I am stable on T3 that I may be approved to keep it. My GP has agreed that if he is in agreement then she will keep prescribing it!
 

SK2018

SK
Messages
239
Location
Asia wide + UK
I do believe there is, but research suggests that ME/CFS is a type of neural malfunction illness, presenting with a wide range of symptoms, but in some way, connected to the neuroimmune system. One can treat each symptom and see possible relief, and perhaps spontaneous healing is more common than we may perceive, but the level of malfunction is to a level in ME that level of disability can be quite high. Also, given the nervous system's central role in almost all bodily processes, many organs can be affected. Unfortunately, neural illnesses can be difficult to address, and ME is as if you combined the symptom variance of MS with the wide variety of triggers of say, many cancers. This does not mean that there is not hope, but ME treatment is very systemic and unfortunately has to be tailored to the individual. Medicine isnt quite there yet with the level of tech required. BUT, we are close, and the internet alone is a great resource for patients , as confusing as things can be.

Agreed ,the best evidence believes that ME patients have a certain damage to the Brain Stem which causes malfunction and lack of organ homeostasis ,whethere that damage is reversible or permanent is anyone's guess for the time being,but your right there is clear neuronal dysfunction ,which also could be damaged neurotransmitters misfiring.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Agreed ,the best evidence believes that ME patients have a certain damage to the Brain Stem which causes malfunction and lack of organ homeostasis ,whethere that damage is reversible or permanent is anyone's guess for the time being,but your right there is clear neuronal dysfunction ,which also could be damaged neurotransmitters misfiring.

Why would rituximab (and cyclophosphamide) be effective if this was the case? Seems unlikely to me. I also haven't seen any prominent researchers or doctors mention "brain damage". Brain malfunction and damage are definitely not the same thing
 

SK2018

SK
Messages
239
Location
Asia wide + UK
Why would rituximab (and cyclophosphamide) be effective if this was the case? Seems unlikely to me. I also haven't seen any prominent researchers or doctors mention "brain damage". Brain malfunction and damage are definitely not the same thing

If I remember correct I'm pretty sure Dr John Chia on some you tube seminar videos I watched with him talking about his entero virus theory did mention infection ,damage and resultant dysfunction of the brainstem due to retrograde transport of the entero virus up the vagus nerve.wheter the virus was cleared and there is still an auto reactive immune response going on there is anyone's guess ,but Rituximab has worked well for a number of CFS patients,this theory with evidence of entero virus brainstem attack has been described well in the hummingbirds website for ME.
 
Messages
8
Hi Tuha,
Your original question " Is there a healing process?" Of course there is a healing process, deep healing does occur.It is inbuilt ,it was put inside us many thousands of years ago.You can stimulate it,far better go to the next level and reactivate it, it will respond.
I found it ,it can and will also happen for you.

I was off work for 30 months .Couldn't walk to the library it was only 800 yards away from my home it took me 18 months to do it. I am now completely recovered from ME/CFS .and if I can recover and return to work( I worked 9 hours yesterday ) at aged 63 years old so there is hope for you.

I classified myself as " moderate ME / CFS "Its a shame that these forums don't let you self categorise in your profile then others who you are communicating with would feel your level of disability.

Some of my mentors and part of my mastermind group are Roger Jahnke,Deepak Chopra,Ken Cohen,Andrew Weil, Jean Achterberg and Sherry Rogers. Healers all with brilliant minds ,to be tapped into and for us all there for the greater good.
Bj.
 
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