Quack cures or the real thing?

[julieevh]

There are quite a few organisations who claim to have all the answers to CFS/ME and Fibro.

Has anyone had any success with any of these?

There was one today that popped up on my facebook wall, from answerstochronicfatigue; a site that claims to help with cfs/me/fm/pvfs; the practitioner claimed she had been diagnosed with CFS/ME and made the comment -

"(I was given both diagnoses but never quite found out why!)"

My reply:

Stupid statement, use any reference you like to discover it is the one condition. Suggests this person is not so knowledgeable as you might like! A real red flag to me.

There are lots of people offering solutions to me/cfs, fm at a price, it is very difficult to know who to trust and difficult not to be cynical and think there are some people out there who are all to ready to exploit those of us who are very vulnerable.

Any bets on this post being deleted, or else answered with a load of technical mumbo-jumbo?

I would love a cure to my CFS/ME and Fibro .... but am not able to pay through the nose for what could well be a wild goose chase. If one of them offered a money-back guarantee I might be a bit more convinced as the money paid would be an investment and not a gamble.

(Obviously I meant the post being deleted off Facebook not here.)

Anyway, to repeat my question, has anyone had any success with any of these various programmes, or are they all just there to exploit us when we are at our most desperate?

Julie xx

[FionaP]

Hi Julie

Sorry to dampen any enthusiasm. They are all sharks. You will find the same companies advertising the same miraculous results for many different conditions. I have met so many who have wasted money they did not have and worse, had their hopes on this roller-coaster for years.

When there is a product that truly helps lots of us or God willing, a cure It will be reported through the testing and then confirmed by the major Fibro Associations.

To keep up to date with what is being researched it is best to check the American sites and Google here as sometimes there is research.

gentle hugs Fi

[julieevh]

It's kind of what I expected Fi; when I was diagnosed with CFS/ME I did a Cognitive Behaviour Therapy course and much of that was about accepting the condition - I don't know that in over 4 years I ever really did .... now I have to accept Fibro as well

Guess I'm living in hope of a magic wand to give me my full life back again instead of just the little glimpses I have nowadays .... don't mean to sound so depressed .... sometimes I just get so jealous of the life I had before all these illnesses started trying to take over!

Julie xx

[LindseyMid]

There are no miracle cures....but there is the possibility that targeted, evidence based treatments can really improve your quality of life. Anyone who says they have the "cure" for Fibro is likely to be either under a misapprehension as to what the condition is (e.g. if your food intolerance has been mis-diagnosed as Fibro and you find that a restricted diet cures your symptoms, that does not mean you have found the cure for Fibro!) or are out to make money from desperate people in pain,

[julieevh]

Thanks Linsey

Is there a list of just what targeted, evidence based treatments do actually improve quality of life? If there are I want to stick it under my GP's nose and ask him to take his pick!

Julie xx