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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Has anyone been completely cured of CFS?

Messages
64
It is looking like POTS at least is a common symptom for ME, Lyme. EDS and of course POTsies ......when people finally get accurately tested for it.
It seems POTS and its significance has been widely overlooked due to ignorance of it and correct testing procedures - again I read the other day of doctors leaving people on tilt tables see if they fainted and using that as a diagnostic method!!!
There is no need to faint to have POTS and a good diagnostician can often diagnose it on symptoms alone..
There are lists of good POTS docs on some fb pages or go to a POT page/s on and request a recommendation to one in your area.
And no - POTS is not cureable at the moment but there are treatment that work well for many people with it.

Ally


This is really interesting to me at this moment in time.

I am having very strange things happening, including completely collapsing and fainting. My heart scan looks good apparently and the Dr said about a tachycardia perhaps. Reading about POTS I wonder if maybe it has something to do with it perhaps.
 
Messages
64
A few more details.
My specialist says it is caused by stress.

They think that if you follow the programme and meds you will get better, if you don't follow it you make yourself ill.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
A few more details.
My specialist says it is caused by stress.

They think that if you follow the programme and meds you will get better, if you don't follow it you make yourself ill.

What programme and meds? What are they saying is caused by stress? And what type of specialist?
 
Messages
64
A CFS specialist.

They believe the whole of CFS is caused by stress.

The programme is rest, but including daily housework for a few hours in the 'pottering' and no tv or computer or reading.

Meds are Amytriptaline (100mg) of a night and prozak in the morning.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
By "pet" theory, I mean that he's about the only one to have come up with it, and that he is personally nurturing and promoting it, rather than doing proper scientific research, or, in the case of Smith, even getting the basic science right in the first place.

I am of the opinion that his unsubstantiated theory, not even based in scientific fact, is dangerous.

He is recommending drugs which are contraindicated in combination with each other, both of which can have serious negative consequences on their own (far less in combination).
ME is not caused by stress anyway and ME sufferers often react badly to those drugs. I could not tolerate 10 mgs of amitriptyline, far less 10 times that.

However, if you are happy with it and finding some success with it, I hope it continues for you.
I will not be trying it.
 
Messages
64
Oh I am not happy with it at all and cannot tolerate drugs such as those.

That's really interesting what you have said, thank you so much.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
great discussion. thanks.

fwiw i wanted to add that findin and treating other possible causes of someone's
cfs or me doesn't always equate to that pwc losing all of their cfs symptoms.

I was told when i was dx'd with celiac disease that i wasn't a pwc anymore
but without knowing exactly which tests confirm cfs i still consider
myself a pwc. I was hoping I wouldn't be but it's been 8 years now
i still have pem, etc. I was dx by a respected cfs specialist so
I trust my dx. I was just hoping it was wrong.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Oh I am not happy with it at all and cannot tolerate drugs such as those.

That's really interesting what you have said, thank you so much.

saying something is cause by stress is vague and unhelpful IMO

they used to say that unequivocally about stomach ulcers until they found the actual cause was a bacteria

Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
This is really interesting to me at this moment in time.

I am having very strange things happening, including completely collapsing and fainting. My heart scan looks good apparently and the Dr said about a tachycardia perhaps. Reading about POTS I wonder if maybe it has something to do with it perhaps.

Yes Cosmo - POTS ill not show up on a cardiac ultrasound - you need to find someone who knows how to test for it - May docs have still never heard of it and will sa you do not have it out of ignorance alas.

It does sound like it matches some of your symptoms and is a very common ME /cfs symptom though often goes undiagnosed. There are lots of POTS groups on Facebook where you find a doc in your area and more info about it.

Also there is more in it in this link
http://forum.notcrazy.net/index.php?topic=9571.0

best of luck

Ally
 
Messages
64
saying something is cause by stress is vague and unhelpful IMO

they used to say that unequivocally about stomach ulcers until they found the actual cause was a bacteria

Ally


I don't think mine was caused by stress anyway.

My fatigue symptoms came on after a really bad virus, but the specialist says that every case is caused by stress, no doubt!!
 
Messages
64
Yes Cosmo - POTS ill not show up on a cardiac ultrasound - you need to find someone who knows how to test for it - May docs have still never heard of it and will sa you do not have it out of ignorance alas.

It does sound like it matches some of your symptoms and is a very common ME /cfs symptom though often goes undiagnosed. There are lots of POTS groups on Facebook where you find a doc in your area and more info about it.

Also there is more in it in this link
http://forum.notcrazy.net/index.php?topic=9571.0

best of luck

Ally


The Dr who did the scan was mentioning about POT's etc and all kinds of things, she really knew her stuff and was talking of the times when she worked in a hospital with a tilting table. I may have a talk when I go back as I am having a 24 hr heart monitor fitted in a few weeks, she may be able to talk to my GP.

It does seem to fit my symptoms a lot, but then again so does many other things!
 

ruben

Senior Member
Messages
286
A colleague of mine has indeed been cured of ME by the Lightning Process - from a point at which she would regularly be found collapsed in a corridor at work in agonising pain and with a whole host of terribly distressing symptoms, to where she has just e-mailed from Cornwall having been kayaking, swimming and coasteering with her family. To call the woman who cured her a "money-grubbing leech" who "preyed" on my colleague is plain wrong. Worse, you could be putting off people who are in desperate need of help from accessing the very process that could help them be reborn.

I am new to this site and I find the tone of some of the posts regarding the lightning process quite disturbing

On the subject of the lightning process and things along similar lines this is something which had occurred to me. I think I'm right in saying that last year sometime, it was reported on on here that some money was being put up to establish the effectiveness or otherwise of the Gupta training programme. Then also last year there was a documentary on the BBC Alba channel about Mickel therapy. I believe too that the Lightning process itself is being looked into by the NHS.My point is that it seems that the people behind these techniques are more than happy to have their approaches highly scrutinized. It doesn't really seem like the behaviour of anyone involved in something dodgy. At this moment in time I'm simply open minded about them.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
They are all psychological treatments/therapies/processes. They may well help with psychological problems, perhaps faster than accessing any psychological therapies via the NHS, and only if you can afford them.

They will not help non-psychological illnesses.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
On the subject of the lightning process and things along similar lines this is something which had occurred to me. I think I'm right in saying that last year sometime, it was reported on on here that some money was being put up to establish the effectiveness or otherwise of the Gupta training programme. Then also last year there was a documentary on the BBC Alba channel about Mickel therapy. I believe too that the Lightning process itself is being looked into by the NHS.My point is that it seems that the people behind these techniques are more than happy to have their approaches highly scrutinized. It doesn't really seem like the behaviour of anyone involved in something dodgy. At this moment in time I'm simply open minded about them.

Well, perhaps they reason that, as the NHS has clearly been taken in by some psychoquacks already, they are open to being taken in by others.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I think there has been some objection to the study on the lightening thing in children - on the grounds that it is unethical.

I saw it on the MEAssociation site, I think. I've not been there for a while - they've changed the format which makes it very, very difficult to navigate or read anything- there's a huge, fussy, brightly coloured background that knocks my eyes for 6.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I found 10 mgs to be intolerable. I was fainting everywhere and completely spaced out. The collapsing and fainting continued for several weeks after I stopped it.
I got quite used to it, mostly managed to get on the floor before I hit it, yelled at my OH to bring me a pillow and blanket and slept for 3-4 hours. Generally on the kitchen floor.
 
Messages
47
I don't think mine was caused by stress anyway.

My fatigue symptoms came on after a really bad virus, but the specialist says that every case is caused by stress, no doubt!!
it is common knowledge that stress lowers the body's immune system