Poll: How Long Did it Take You to Begin Treatment?

[Jesse2233]

How long did it take you to begin treatment for your condition?

I'm not referring to diagnosis, supplements, or palliative treatments but specifically referring to medical intervention targeted at a core, albeit theoretical, pathology.

PS - also not CBT/GET

Thanks!

 

[deleder2k]

Perhaps add an option that is "no treatment offered"?

 

[halcyon]

Diagnosed and started treatment within the first year. I thought I'd be one of the lucky ones. Three years later I'm not sure how lucky I am now.

 

[NelliePledge]

Are you including medication to reduce symptoms like sleep/pain amitryptiline, pregabalin? if not you'd need to add not getting medical intervention

 

[Sushi]

How long did it take you to begin treatment for your condition?

You might want to extend the 10 years + to be a little more explicit--could be interesting as for many of us it was about 30 years.

 

[Murph]

Minor thing but the spacing on the first four options is wacky. should be 1-3 months; 4-6; 7-9; 10-12.

 

[Jesse2233]

Minor thing but the spacing on the first four options is wacky. should be 1-3 months; 4-6; 7-9; 10-12.

Argh you're right, @Sushi?

 

[Neunistiva]

Which treatment would that be? I was not aware anyone was offering ME/CFS treatments (just symptom management) outside of scientific studies

 

[me/cfs 27931]

You might want to extend the 10 years + to be a little more explicit--could be interesting as for many of us it was about 30 years.

37 years here. No option for that, so I'll check 30 years.

 

[Jesse2233]

Which treatment would that be? I was not aware anyone was offering ME/CFS treatments (just symptom management) outside of scientific studies

Well I suppose that depends on a wider philosophical question of what you believe the underlying etiology to be (for at least a subset) and whether or not you think a current treatment addresses it (even sporadically).

For example:

Dr Chia believes it's enterorviruses and he prescribes Equilibrant to suppress them

Dr Shoemaker believes it's mold, and he uses CSM to unbind toxins

Fluge and Mella posit that it's autoimmune (for a subset) so they use RTX and Cyclophosphamide for immunosuppression

 

[Molly98]

Perhaps you need to add the option- UK resident so No treatment options available

 

[Lissyleigh]

I was never offered any treatment.

 

[Alvin2]

I've known something is wrong for close to 30 years and have tried dozens if not hundreds of treatments, but i was not nearly this bad until the last 5 years.
So i'm not sure how to answer

 

[edawg81]

Although my health continues to deteriorate i got in to see a good specialist 8 weeks into my signifcant illness onset (although i was sick and high fuctioning for the last 10 years). A practioner who has experience with me cfs and got me on an antivrial protocol right away.

I owe it all to the trolls in the cebv forum on facebook. If it wasn't for them bugging me to see a REAL doctor I would still be left untreated by local doctors.

Oh can I thank the forum too? You guys are the best, I learn more everyday.