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

[CFSRecoveryGroupLondon]

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.

When I met all concerned they were obviously not bed bound or housebound. But they all were at some point and had improved enough to not be when I met them. Some drifted in and out of AA as their symptoms changed. People in AA generally see it as a like or death thing and as such will come to a meeting even if it might make them feel awful physically. I know I have.

 

[trishrhymes]

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.

Not sure I agree, @Mary. ME covers a broad spectrum of severity from mild (and able to work part time or equivalent) to very severe. Many of us have gone through phases at different levels of severity, and could have attended such meetings in the milder phases. Though we would probably all have to give up something else in order to manage it, and rest before and after.

 

[dangermouse]

Ten years ago I tried Ashok Gupta's "amygdala retraining" program - no stone left unturned. One of the exercises involved consciously ignoring my body's distress signals that I was over doing it, assuming apparently that it was my focus on how I felt that caused my symptoms, rather than the symptoms causing the focus. I promptly crashed after deliberately ignoring what my body was telling me.

Actually Phoenix Rising is a "recovery focused" group -that is our prime goal! We all want our lives back. It's not a negative place at all, and actually is one of the few things that give me hope. I have learned so much here. and many have been badly hurt by the mind-body theories surrounding ME/CFS, as institutionalized by the British medical system and others.

I (in my desperation, over the past 10 years) have tried a couple of techniques that included positive thinking (which I'm very good at) and ignoring the symptoms that my body was producing (painful and exhausting, but foolishly I did it) I've also tried increasing activity slowly to my great detriment (and causing upset for my family and friends). I don't have a fear of boundaries or limits or trying anything, and that has resulted in severe relapses. I am currently taking great hope and uplifting joy from Ben's visit with Ron Davies and his wife and son (hope I've remembered the names correctly) and also have hope with other promising research e.g Fluge & Meller Rituximab trials.

I have become so ill (housebound) after trying to ignore ME and deny it and push myself to try to recondition (after advice from Drs) that I must now accept my limitations and live as well as I can manage till recognition, treatment & (dare I hope) cure be developed for this debilitating illness.

I am new here and haven't always enough energy to comment, though I take great comfort in the support and knowledge that the community have developed on this forum.

 

[hellytheelephant]

I so agree with you @dangermouse re positive thinking and pushing through the pain. Having inproved significantly at one point ( I am now mainly bedbound), I know that WHEN you are actually getting better then gradually increasing activity becomes both relevant and helpful....

For me now, if I try to gradually increase activity of any kind I crash. I does not matter if I increase incredibly slowly- I crash. It is very hard for most medical professionals to understand this, as it does not fit the pattern of recovery of the acutely ill- they are ill, rest, get deconditioned, then need to gradually work on fitness by increasing levels gradually.

I don't know why so much medical training seems focused on performing the wonder of 'cure' when there is an epidemic of chronic mental and physical illness that needs to be managed in ways that are helpful and healthful.

As for positive thinking- so many people I have met on PR are natural optimists and others have become expert at taking the really desperate and unhappy situation they are in, and not only keeping up interests and trying new solutions, but bothering to log on and help others!

 

[dangermouse]

Yes @hellytheelephant I am pretty much the same, any slight increases to activity in any way brings on a crash and sometimes I mistake adrenaline for energy! I can easily overdo it if I have energy as I've been so restricted in what I can do.

It is incredibly hard for medical professionals to grasp what is happening when I explain and they do seem stuck in their answer which is for me to develop stamina....if only they knew how much I've tried to do just that. It never works out well.

The people on here seem to be very optimistic and incredibly helpful and so knowledgeable.

 

[Freespirit]

There is a difference between the common meaning of recovery- getting back to 'normal' (i.e. recovered), and that used in AA and other 12 steps groups- managing the condition long term, never say recovered.

I think this accounts for the confusion, tho I'm sure the Gupta ppl will talk about recovered. Ppl do get better, of course, and unfortunately may relapse again.

(Not sure wot get/cbt/pace are- imagining recovery/fabricating recovered?)
The truth is that no one thing (except rest perhaps) always helps every pwme, many things help some ppl, some of the time.
So no harm sharing, but don't claim a cure or proven treatment, there isn't one as yet

 

[Freespirit]

And it's possible that ppl are misdiagnosed, so until we have testing for the cured we will never know what they recovered from!

 

[Snowdrop]

And it's possible that ppl are misdiagnosed, so until we have testing for the cured we will never know what they recovered from!

Very true.

I think this accounts for the confusion, tho I'm sure the Gupta ppl will talk about recovered. Ppl do get better, of course, and unfortunately may relapse again.

This makes it sound though as if ME is like Alcoholism the way one can 'relapse'. I think alcoholism is a more complex example in that there are more pressing environmental factors involved.

People with ME can and do relapse the way someone with MS can have a relapse of symptoms.

I personally doubt Gupta training can eliminate symptoms experienced as part of the ongoing disease process.

And I often wonder when people report such if they are being completely clear about whether they were just doing this therapy or whether they were busy trying a variety of things at once. Some medications do reduce/mask symptom expression.