"Young people have a better chance of recovery", how much do we know about this?

[me/cfs 27931]

There is absolutely no reason why a physical illness should not remit spontaneously to allow a satisfying life and it seems as if this is not rare for young people with ME

As the majority currently go undiagnosed and therefore unmanaged/untreated, I suspect this undiagnosed majority have significantly less hope of "recovery", regardless of how that is defined.

 

[Bevrl55]

I think this issue can be solved through the food. Intaking food with Vitamin B, potassium and magnesium can reduce it to an extent.

 

[Jonathan Edwards]

And the experience of hundreds of thousands of patients, desperate to regain their livelihoods, along with...well, several Doctors trying to no avail, to do something, anything of assistance, would suggest that it is silly to opine that this illness would simply, "suddenly vanish".

You have misinterpreted my point. My point is that disabling physical disease do sometimes just vanish. Therefore the fact that ME/CFS is a physical disease does not lead us to be able to say it cannot remit spontaneously. How often it does is very hard to establish but the fact that there are lots of people who have not got better does not help us decide. We need a population based survey. .

 

[pamojja]

I'm new here. And was gladly surprised to read in this post that in long-term retrospective studies 5 to 10% remissions have been found.

I am realistic. Not pessimistic.

So what is the reason (..other retrospective studies not mentioned?) you consider these numbers actually to be nil?

 

[lansbergen]

My point is that disabling physical disease do sometimes just vanish. Therefore the fact that ME/CFS is a physical disease does not lead us to be able to say it cannot remit spontaneously.

That I can agree on.

 

[Chrisb]

Therefore the fact that ME/CFS is a physical disease does not lead us to be able to say it cannot remit spontaneously

But "can" it only remit spontaneously in those in whom it does remit spontaneously? How could we know whether it could remit spontaneously in those in whom it does not?

 

[pamojja]

But "can" it only remit spontaneously in those in whom it does remit spontaneously? How could we know whether it could remit spontaneously in those in whom it does not?

We don't know.

However, there has been a study of many of those 'spontaneous' remissions in cancer patients documented in the literature. At least here we know they are not as spontaneous as they appeared to the Doctors documenting each case, without even being interested in what they have done differently...

During the course of the study, Kelly identified more than seventy-five factors that cancer survivors said they used as a part of their healing journey. Nine of these factors were used by almost every one of them. They are as follows:

1. Radically change the diet
Let your food be your medicine, and medicine your food (Hippocrates)
- Avoid sugar, meat, dairy products and processed foods
- eat lots of fruits and vegetables
- limit to organic food
- drink only filtered water

2. Take control of health
Action is the basic key to success (Pablo Picasso)
- actively participate
- be prepared for change
- resolve resistance

3. Follow your own intuition
In vital matters, the decision should come from the unconscious, somewhere from within (Sigmund Freud)
- listen to body signals
- activate the intuition
- find the right change

4. Take herbs and food supplements
The art of healing comes from nature and not from the physician (Paracelsus)
- help digestion: digestive enzymes, prebiotics and probiotics
- boost the immune system: e.g. Vitamin C, other vitamins (B12, D3, K2), fish oil, trace elements, certain edible fungi, aloe vera; and hormones (melatonin)
- detoxify the body:
- antimycotics (eg olive leaf extract, celery, nettle)
- antiparasitic substances (eg wormwood, yellow root, black nut husks)
- antibacterial and antiviral (eg garlic, oregano oil, Pau d'Arco)
- liver detoxification (eg milk spotted dwarf, dandelion root, sweet tooth root)
- supplements alone is not enough

5. Release oppressed emotions
Anger is an acid which can cause much greater damage to the vessel in which it is stored than to what it pours (Mark Twain)
- disease is blockade
- what are suppressed emotions?
- stress and cancer
- anxiety and cancer
- the waterfall solution

6. Enhance positive emotions
The meaning of life is to be happy (Dalai Lama)
- what are positive emotions?
- what are the positive emotions in the body?
- happiness must be practiced daily
- but one does not have to be permanently happy

7. Allow social support
In poverty and misery, friends are the only refuge (Aristotle)
- experience love- do not feel alone
- physical contact

8. Deepen the spiritual connection
This is the greatest mistake in the treatment of diseases: that there are doctors for the body and physicians for the soul, where both can not be separated (Plato)
- experience sprituality
- a third kind of love
- the relationship between the physical and the spiritual
- it is important to exercise regularly
- it is important to calm the mind

9. Have strong reasons for life
People say that it is the meaning of life that we all seek. I do not believe that this is what we are really looking for. I believe what we are looking for is an experience of being alive ... (Joseph Campbell)
- place deep trust in his inner being
- the mind directs the body
- find ones calling

http://www.radicalremission.com/

 

[pamojja]

Also I'm certain this DOES NOT mean a cancer-patient could be in any way be sure of remission when creating these common factors. But could at least be considered necessary preconditions, as buying a lottery ticket is for winning a jack-pot..

Got of-topic by talking about cancer remissions. With ME/CFS we seem to know nothing yet.

 

[CCC]

Maybe one reason young people do have a greater chance of getting better is that they have families to look after them.

The mum takes on the angst of dealing with doctors, does the research, buys the supplements/herbs/books, cooks, cleans, switches off the modem to enforce bedtime at a reasonable hour ... (so I'm feeling privileged from all the work today - and this thread came to mind)

Okay, so it's a gross generalisation: it's not always the mum, and not all families are as supportive, but young people do have a better chance to just rest than adults who are expected to do more, even if they can't.

 

[BruceInOz]

However, there has been a study of many of those 'spontaneous' remissions in cancer patients documented in the literature.

To be meaningful you would also have to know how many people did those nine things and did NOT get better.

 

[Revel]

I first became ill aged 9 (hospitalised for months and initially not expected to survive). As soon as I was strong enough, I was forced back to school, which put the brakes on my recovery and I relapsed badly, aged 15 (hospitalised again).

Recovery plateaued until I reached my early twenties. Then, without any forewarning, I achieved a spontaneous full remission - no treatment, supplements/herbs, faddy diets, "mindfulness", CBT/GET, etc. It just happened.

I re-joined the world as a “normal” person and had no restrictions whatsoever on what I could physically do (oddly, I was still extremely alcohol intolerant, but this didn’t bother me one iota).

Had you asked me during this decade of my life, “Are you recovered?”, I would have said “Absolutely, 100%”.

Unfortunately, it wasn’t to last and as I hit my thirties, I relapsed and have been unwell ever since. The past 20 years have followed a relapsing/remitting course with an ever-downwards trajectory to my current housebound state. My gut feeling is that I will not achieve an improvement in my condition now without the intervention of, as yet, undiscovered appropriate medical treatment.

I believe that remission is possible, no matter how badly affected you may be at your lowest point. Also, the younger you are, the greater the chance that you may achieve full remission. However, whether or not you are lucky enough to be able to hang onto it is another matter entirely - I say "lucky enough" because to this day I have no idea what triggered my relapse from full remission.

I don’t think that once you have ME, you can ever consider yourself to be “recovered”.

 

[pamojja]

To be meaningful you would also have to know how many people did those nine things and did NOT get better.

Probably the majority, we don't know. However, as I already wrote, to know the preconditions for remission in cancer does already have some meaning for some.

Also I'm certain this DOES NOT mean a cancer-patient could be in any way be sure of remission when creating these common factors. But could at least be considered necessary preconditions, as buying a lottery ticket is for winning a jack-pot..

And do call them 'spontaneous', when so much effort went in each of those cancer remissions, is really misleading.