Use of stimulants for ME/CFS

[forestglip]

Ok. So some meds fall into the category 'they work but we don't know how or why'?

Yes. Unfortunately, I don't have a lot of examples off the top of my head. But for example, they don't really know how SSRIs work for depression (if they actually work at all and it's not placebo).

Wikipedia

Owing to the lack of a widely accepted comprehensive theory of the biology of mood disorders, there is no widely accepted theory of how these changes lead to the mood-elevating and anti-anxiety effects of SSRIs.

Another example is general anesthesia:

General anesthetics are very potent and effective in transiently inhibiting neuronal communication (6). However, despite their widespread use, the mechanisms of their anesthetic action are not fully understood. Based on the studies published over the last few decades, it appears that there are specific cellular targets through which general anesthetics act (7). In general, enhancement of inhibitory synaptic transmission and/or inhibition of excitatory synaptic transmission have been reported. [...]

 

[Jonathan Edwards]

Yes. Unfortunately, I don't have a lot of examples off the top of my head.

Aha! It is easier being a rheumatologist. Drugs that have been used for RA without knowing why they work:

Gold
Penicillamine
Chloroquine
Sulphasalazine
Aspirin until John Vane
Azathioprine
Methotrexate
Cyclophosphamide
Leflunomide

In fact everything until TNF and Il-6 inhibitors and rituximab in the 1990s.

 

[wabi-sabi]

Sugar and caffeine combo provides immediate boost for pwME”

I really am surprised and gratified how much difference caffeine makes for me. English breakfast tea is an important part of my medication regimen, and definitely the most enjoyable part. I wish I could stuff myself with chocolate covered espresso beans...

 

[MrMagoo]

I really am surprised and gratified how much difference caffeine makes for me. English breakfast tea is an important part of my medication regimen, and definitely the most enjoyable part. I wish I could stuff myself with chocolate covered espresso beans...

I’m very pro-caffeine

 

[Trish]

I’m very pro-caffeine

I'm not. Makes my heart race and miss beats, and keeps me awake at night.

 

[MrMagoo]

I'm not. Makes my heart race and miss beats, and keeps me awake at night.

Three years without it was torture. 100mg after waking stops me from going back to bed.
It won’t work for everyone, and I don’t start dictating what others should do just based on my own experience!

I think it’s fine if the BF thing helped him, or he thinks it did. Not any of us are where he was. I doubt the NHS will start offering BF and as Peter T says, it’s too difficult a protocol for the average pwME to manage without significant assistance and care.
However, bringing in Ron Davis as the authority who says the biology checks out is a step too far.

[Mod note: Text not relevant to this thread after the thread was split has been greyed]

 

[NelliePledge]

I'm not. Makes my heart race and miss beats, and keeps me awake at night.

Yep seconded.

When I didn’t know I had ME I pushed through at work for years using strong coffee and sugary snacks eventually I had to give up both due to the resulting insomnia