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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New here, not sure where to post

Messages
19
Hello everyone,

I've been suffering from various symptoms off and on for about 7 years. About a month ago I had another episode of whatever it is, and I have been quite sick since then.

I was so frustrated with my doctor because she was telling me it was chronic fatigue syndrome, but I didn't think that covered my symptoms and I really didn't take it seriously as a diagnosis, because I thought there was no treatment. But finally I did look it up on the Internet and found a Canadian consensus document overview. The symptoms described there in fact coincide very well with what I have been experiencing.

So now I am looking to do some reading other than this consensus document overview (which is intended for physicians). I was hoping that someone could point me in the direction of some very good reference sources/sites. I specifically information on treatment options that a doctor would take seriously. This consensus document overview that I found does not go into detail on treatments.

Thanks!

Mary
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hello everyone,

I've been suffering from various symptoms off and on for about 7 years. About a month ago I had another episode of whatever it is, and I have been quite sick since then.

I was so frustrated with my doctor because she was telling me it was chronic fatigue syndrome, but I didn't think that covered my symptoms and I really didn't take it seriously as a diagnosis, because I thought there was no treatment. But finally I did look it up on the Internet and found a Canadian consensus document overview. The symptoms described there in fact coincide very well with what I have been experiencing.

So now I am looking to do some reading other than this consensus document overview (which is intended for physicians). I was hoping that someone could point me in the direction of some very good reference sources/sites. I specifically information on treatment options that a doctor would take seriously. This consensus document overview that I found does not go into detail on treatments.

Thanks!

Mary

Welcome to the forum.

The International Consensus Criteria is newer than the Canadian and with it is a primer for physicians.

http://www.hetalternatief.org/ICC primer 2012.pdf

Have a look!

Best wishes,
Sushi
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Welcome to the forum.

The International Consensus Criteria is newer than the Canadian and with it is a primer for physicians.

http://www.hetalternatief.org/ICC primer 2012.pdf

Have a look!

Best wishes,
Sushi

I too suggest you check out the International Consensus Criteria for ME.. as it helps to distinguish ME from out of the waste basket CFS subgroups.

Im glad you managed to find the Canadian Consensus CFS defination to see how you fit with things. (The new International ME one is the CC CFS one upgraded and put in a better way to distinguish ME people).

Unfortunately there is no treatment as in cure but there are things you can try to improve things some.

There are some treatment protocols for improvement around the place eg the methylation protocols at this site help some. Some ME experts also have their basic protocols online eg I suggest to check out Dr Sarah Myhills Book online which she keeps updating (Diagnosiing and Treating CFS) The PDF link for it is at http://drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill
 

Wifi123

Senior Member
Messages
159
Hi A,

I have suffered ME and CFS since 1969, and there are many syndromes that are similar to each other. I discovered after many years of running around in circles trying to heal myself believing that I was a ME and CFS sufferer, when all of a sudden over the the past decade my suffering became worse. Today, there are many illnesses that are not being diagnosed properly, and you need to be aware of them. Here is one site to view of a person who has been suffering the same as me for a very long time:
http://wirelessmess.org/are-cfs-mcs-and-ehs-the-same-illness/
and this one:
http://limbicretraining.com/contributors/lindaw/youre-never-too-old/

These are for information for you to understand the adversity of the many syndromes whose symptoms are similar.