CFS Recovery Group London - ANS Rewire/Gupta Programme/Optimum Health Clinic

[Sushi]

FWIW, I meditate almost every day, have for many years, it helps keep me sane with this awful illness; but it has not improved my physical health.

Ditto!

 

[IreneF]

I used to walk around 4000 steps a day and I now walk close to 8500 ED.
I couldn't exercise now go and lift weights for an hour a week, with no crash the next day.
I get significantly less anxiety and panic than I used to. It's ramped down from around 8/10 intensity to around 4/5 which is significant for me.
My mood has stabilised.
I began being able to do household chores like cooking a few times a week and cleaning dishes.
My energy levels have improved from around 45/50% to around 65/70% on the functional scale.
This has been in around 4 months or so I guess. Times where I have been more focused on the process I improve quicker. Times when I don't I don't.

I've gone from being housebound to driving myself places, shopping for groceries, and cooking about every other day.

But I haven't done anything in particular to cause this improvement. I have no idea why it's happening.

 

[IreneF]

AA is classed as pseudoscience by most medical practitioners but it still works. If your family members want to talk to me about these programmes they are welcome to.

Until there is a medical cure for CFS I'm still going to be trying mind/body programmes. AA isn't a 'cure' for addiction but I'm sure your family members will attest that it hasn't stopped them going and committing to it

Some people claim that AA isn't any more effective than individual attempts to quit.

 

[chipmunk1]

it's not possible to create an AA for CFS because:

ME is not an addiction.
It's not a behaviour.
It's not something that you crave.
It's not something that is tempting and that you need to resist.

Ever heard of an AA for migraine?

I used to walk around 4000 steps a day and I now walk close to 8500 ED.
I couldn't exercise now go and lift weights for an hour a week, with no crash the next day.
I get significantly less anxiety and panic than I used to. It's ramped down from around 8/10 intensity to around 4/5 which is significant for me.
My mood has stabilised.

Exercise can improve mood and at least subjective energy levels in some fatigue sufferers if you are not too sick but it does not cure anything. It does not prevent progression of illness or treats any illness. Being fatigued can have many causes, undiagnosed autoimmune disease for example.

Feeling better from exercise does not mean it is psychosomatic. Even healthy people can experience these improvments with exercise.

I would rather spend my time and energy trying to get a good diagnosis and try various treatments.

Be honest with yourself. Are you really well or just coping? if you have been ill for a long time you tend to forget how good health feels. You might have improvements in some areas and falsely conclude you are getting close to wellness while you are still very sick in reality.

 

[CFSRecoveryGroupLondon]

Hi everyone

I had a think last night and I'd like to apologise for my behaviour on this thread. I really didn't intend for it to head in the direction it did.

Recently I was recommended to post on reddit and the first reply I found really difficult to handle. I've had similar responses IRL where I've had hostile responses 'you can't get better from mind/body programmes,' when I mentioned I was doing such a programme. I've found my relationship with the wider CFS community quite strained accordingly.
Subsequently, I put in the preamble about holding off on negative responses because I didn't want to feel as if I had to defend myself about pursuing this path, as I have felt before.
I thought I'd get maybe 1 person if I was lucky who might be interested in joining. I wasn't sure if this website was one where people post discussions or advertisement type posts. Obviously, I know it's a discussion website now.


I apologise for the way I acted and I can see how it came across. That wasn't my intention.
It wasn't my intention to make anyone feel bad either, but I know people did. I'm sorry for that.

I'll edit my initial post to add in an email address and if down the line people are interested they can email me about the group and can ask me about details of where and when we meet.

Once again I'm sorry. I know there are many paths to recovery and people work at what works best for them based on their own strengths and weaknesses, symptoms and history, resources and time. This is mine. I wish you luck on yours.

Rahul

 

[Undisclosed]

@CFSRecoveryGroupLondon -- if you put your email in a post, you will be at risk of having your email added to many spammers lists. If you write "at" instead of @ in the email address that might stop the bots getting your email address.

 

[trishrhymes]

Thank you for the apology. I wish you well.

 

[CFSRecoveryGroupLondon]

it's not possible to create an AA for CFS because:

ME is not an addiction.
It's not a behaviour.
It's not something that you crave.
It's not something that is tempting and that you need to resist.

Ever heard of an AA for migraine?



Exercise can improve mood and at least subjective energy levels in some fatigue sufferers if you are not too sick but it does not cure anything. It does not prevent progression of illness or treats any illness. Being fatigued can have many causes, undiagnosed autoimmune disease for example.

Feeling better from exercise does not mean it is psychosomatic. Even healthy people can experience these improvments with exercise.

I would rather spend my time and energy trying to get a good diagnosis and try various treatments.

Be honest with yourself. Are you really well or just coping? if you have been ill for a long time you tend to forget how good health feels. You might have improvements in some areas and falsely conclude you are getting close to wellness while you are still very sick in reality.

I meant specifically to use the peer support model of AA in CFS. I am in AA and know CFS is not an addiction.

I've never claimed to be well and I don't claim to be 'coping'.
But being honest with myself, I am improving. I can't deny that. Others have seen it in me and commented on it, month by month. I've noticed it too, in tangible and also subjective things.
Mentally I feel better, physically and spiritually too.
Interests in hobbies and outside things have improved
Being able to put my health first over other people e.g. family and friends. I've struggled with this historically.
Being able to put down boundaries,
My physical health also, as detailed above.
Moods have stabilised and improved.
More sure of my sense of self.
Symptoms that I log have lowered month by month. Some have stabilised and others lowered.

 

[CFSRecoveryGroupLondon]

@CFSRecoveryGroupLondon -- if you put your email in a post, you will be at risk of having your email added to many spammers lists. If you write "at" instead of @ in the email address that might stop the bots getting your email address.

Thanks. Thats why I didn't put it up in the first place I'll change it now.

 

[CFSRecoveryGroupLondon]

Some people claim that AA isn't any more effective than individual attempts to quit.

There's a lot more reasons that people stay in AA than just quitting alcohol. Fellowship, family support, self-reflection, a sense of belonging, shared trust.
There's an AA saying ' I came for my drinking and stayed for my thinking,' which old timers say.

 

[Mary]

There's a lot more reasons that people stay in AA than just quitting alcohol. Fellowship, family support, self-reflection, a sense of belonging, shared trust.
There's an AA saying ' I came for my drinking and stayed for my thinking,' which old timers say.

I have a couple of family members in AA and they and I believe it saved their lives. They are both very long-term members now (over 20 years) - it's a great program and has saved many many lives. Before AA, there were virtually no effective treatment options for alcoholics or other addicts - kudos to you for going!

 

[Artstu]

But being honest with myself, I am improving. I can't deny that. Others have seen it in me and commented on it, month by month. I've noticed it too, in tangible and also subjective things.
Mentally I feel better, physically and spiritually too.
Interests in hobbies and outside things have improved
Being able to put my health first over other people e.g. family and friends. I've struggled with this historically.
Being able to put down boundaries,
My physical health also, as detailed above.
Moods have stabilised and improved.
More sure of my sense of self.
Symptoms that I log have lowered month by month. Some have stabilised and others lowered.

I reckon I could say more or less all that about myself, bar the spiritual bit. and I've done it without having an electrician in to rewire me can't resist that sorry, talk of ANS rewire thing makes me laugh out loud.

To be clear I've not done any of the mind/body recovery programmes; namely ANS Rewire, Gupta Programme or the Optimal Health Clinic. that you mention.

 

[CFSRecoveryGroupLondon]

I have a couple of family members in AA and they and I believe it saved their lives. They are both very long-term members now (over 20 years) - it's a great program and has saved many many lives. Before AA, there were virtually no effective treatment options for alcoholics or other addicts - kudos to you for going!

Thabk you. It was either go or die. I see lots of crossovers between CFS and addiction. Both not understood well by doctors and stigmatised by the wider public, not supported by insurance companies, and both seem to be treated well with multi layered recovery programmes.
Lots of lots of people who get sober get CFS within a year or 2 after getting sober. I've met about 14 people who got CFS in early AA sobriety. The people I all mentioned earlier who recovered from mind /body programmes are all friends from AA. Maybe not a surprise that they are open to mind/body programmes when they have used a programme with AA.

 

[TiredSam]

I reckon I could say more or less all that about myself, bar the spiritual bit.

Me too, I have managed considerable improvements over the last few months. I put it down to maintaining an attitude of angry sarcasm.

Be honest with yourself. Are you really well or just coping? if you have been ill for a long time you tend to forget how good health feels. You might have improvements in some areas and falsely conclude you are getting close to wellness while you are still very sick in reality.

That is so true - in comparison with how I was a year ago or how many other sufferers are I'm doing great, but I only have to try going for a walk or getting through a whole day without lying down to be reminded that I am nowhere near good health. I've just got used to ME, so a day without a headache is enough for me to think everything's great. Plus that old liar adrenaline continues to amuse itself at my expense.

@CFSRecoveryGroupLondon that apology is mighty big of you, I appreciate it. If it was just a case of everyone doing their own thing and live and let live there wouldn't be a problem, but since having ME I've come to view those who promote the therapies you mentioned not as harmless alternatives, but more as parasitical, manipulative and abusive rip-off merchants preying on the ill and vulnerable, taking their money and blaming them for continuing to be ill when the therapy doesn't work.

But I think those points have been made. Whenever I see such therapies promoted it brings out the worst in me - a red rag to a bully, if you like. Speaking of which, my small band of henchpersons are currently out on a job, but if I see them again I'll instruct them to stand down. Not that they ever do anything I say. I don't actually know any of them personally and have never had a private conversation with any of them, they just seemed to gather around my post like bystanders at an accident. But I'll do what I can.

 

[Valentijn]

... and both seem to be treated well with multi layered recovery programmes.

No, in the case of ME/CFS there is no indication that "recovery" programs result in anything resembling recovery, and there are a lot of trials showing that biopsychosocial treatments are a complete failure.

 

[A.B.]

Thabk you. It was either go or die. I see lots of crossovers between CFS and addiction. Both not understood well by doctors and stigmatised by the wider public, not supported by insurance companies, and both seem to be treated well with multi layered recovery programmes.
Lots of lots of people who get sober get CFS within a year or 2 after getting sober. I've met about 14 people who got CFS in early AA sobriety. The people I all mentioned earlier who recovered from mind /body programmes are all friends from AA. Maybe not a surprise that they are open to mind/body programmes when they have used a programme with AA.

Actually, the evidence overwhelmingly shows that CBT/GET doesn't work in CFS. The authors of the relevant studies never openly admit this and find ways to spin the results, but the fact is that objectively measured function and health do not improve with these treatments. They are merely a placebo treatment that for a while gives patients the illusion and false hope that they are going to get better. CBT/GET could be classified as "multi layered recovery program". It's unlikely that other programmes will do any better. We have had a huge amount of discussion on this topic and it has been well researched within the patient community. If it worked I think we would have more than anecdotes and spindoctor research after 20+ years.

Anyway, it's possible that your definition of CFS differs markedly from ours, and that we are in effect talking about totally different types of illness. I think it's most likely that confirmation bias is playing a large role in these anecdotes of recovery with mind body programmes.

 

[Mary]

Thabk you. It was either go or die. I see lots of crossovers between CFS and addiction. Both not understood well by doctors and stigmatised by the wider public, not supported by insurance companies, and both seem to be treated well with multi layered recovery programmes.
Lots of lots of people who get sober get CFS within a year or 2 after getting sober. I've met about 14 people who got CFS in early AA sobriety. The people I all mentioned earlier who recovered from mind /body programmes are all friends from AA. Maybe not a surprise that they are open to mind/body programmes when they have used a programme with AA.

I don't see any crossovers between ME/CFS and addiction. when you say "both seem to be treated well with multi-layered recovery programmes", I don't know what you mean by "multi-layered recovery programmes", though I assume you're trying to say "mind-body" program without really saying it,

I went to Al-Anon for 10 years because my ex-husband was an alcoholic, and Al-Anon is a fantastic program, as are all the 12-step programs. So I'm very familiar with it. And I still use my Al-Anon tools in my daily life. But it has done nothing to help my recovery from ME/CFS.

I don't consider AA to be a "mind-body" program. It definitely can help tremendously with the mental/spiritual etc. aspects of addiction, but doesn't do anything for physical issues which may arise from or contribute to addiction.

And I think @A.B. may very well be right in that your definition of ME/CFS is not the same as ours. My sister who is intimately familiar with ME/CFS due to my illness and who has been in AA for over 20 years, has never said anything about any connection with sobriety and ME/CFS - and she would know - she's known hundreds of people (maybe thousands) over the years who have gotten sober in AA.

It's possible that the people you know who got sober who developed physical problems were dealing with sequelae from their addiction, which eventually resolved. But it wasn't ME/CFS.

 

[Snowdrop]

@CFSRecoveryGroupLondon
I also appreciate your considered tone and openness.

It is well known in the ME community that the UK the medical establishment (in particular) quite deliberately calls any unexplained fatigue cfs.
This is done to dilute the true ME sufferers into a pool of general fatigue that includes among other health issues--depression that can be studied and who will respond to the now ubiquitous CBT and mind therapies.

There is political incentive behind this as it would save money in testing for unusual illnesses not easily uncovered by a simple x-ray or MRI.
There are other reasons as well and these have been documented at length in a history of this illness and it's neglect at the hands of political/medical authorities. See below my post in the signature for The burial of ME.

This is part of what the responses have been about here.

It makes sense, at least to me that it's possible some of your friends and the people you hear about that recover using therapies you've tried do so because they may have been self-medicating for depression using alcohol. This is not really new. So that ceasing alcohol use could very well bring on a return of previous symptoms that can and do respond to therapies that do not work for ME. That's not to say that alcoholics or those recovering from can't develop ME , obviously they can. But medicine is unlikely to make a distinction.

At the core of the disease that is ME is that exertion beyond a baseline functioning unique to the individual and which can change over time causes a worsening of symptoms many of a flu-like or neuro-immune nature.

 

[Mary]

Lots of lots of people who get sober get CFS within a year or 2 after getting sober. I've met about 14 people who got CFS in early AA sobriety.

One more thing - if all these people had ME/CFS, they would not have been able to attend AA meetings. Several years ago I briefly considered going to Al-Anon again (though my ex is no longer in the picture) just for moral support because this illness is so isolating, but quickly realized I can barely get the groceries I need, much less attend meetings regularly. Your AA friends would have been bed or housebound for the most part if they had ME/CFS, just struggling to manage the essentials of survival.

 

[CFSRecoveryGroupLondon]

I don't see any crossovers between ME/CFS and addiction. when you say "both seem to be treated well with multi-layered recovery programmes", I don't know what you mean by "multi-layered recovery programmes", though I assume you're trying to say "mind-body" program without really saying it,

I went to Al-Anon for 10 years because my ex-husband was an alcoholic, and Al-Anon is a fantastic program, as are all the 12-step programs. So I'm very familiar with it. And I still use my Al-Anon tools in my daily life. But it has done nothing to help my recovery from ME/CFS.

I don't consider AA to be a "mind-body" program. It definitely can help tremendously with the mental/spiritual etc. aspects of addiction, but doesn't do anything for physical issues which may arise from or contribute to addiction.

And I think @A.B. may very well be right in that your definition of ME/CFS is not the same as ours. My sister who is intimately familiar with ME/CFS due to my illness and who has been in AA for over 20 years, has never said anything about any connection with sobriety and ME/CFS - and she would know - she's known hundreds of people (maybe thousands) over the years who have gotten sober in AA.

It's possible that the people you know who got sober who developed physical problems were dealing with sequelae from their addiction, which eventually resolved. But it wasn't ME/CFS.

Yeah maybe the definitions we are using is different.

I've mentioned I have CFS in a fair few AA meetings and when I do i often get someone come up to me and tell me that they have been diagnosed with it. Or vice versa people share about it and then I go and speak to them. - I assume your sister doesn't have it. So is probably unlikely to regularly share about it and find those other people.

The crossovers I referred to were the stigma around the illness and derision by the medical community at large and multi layered I meant not 'just take this pill and get out of my office.' There's many different ways that people treat CFS and addiction. But no official way. At least not in the UK that I know.