What if....

[digital dog]

What if CFS/ME (hate to throw these together so forgive me if it offends people) is an autoimmune condition?

There are so many different autoimmune conditions that attack different parts of the body; the stomach with crohns, the thyroid with hashimotos, the joints with arthritis etc Recent research has even shown that alopecia is an auotimmine condition in which the immune system attacks the hair follicles and they are now saying fibro is autoimmune.

A lot of people develop autoimmune conditions after virus, accidents, injections, pathogens etc.

It would explain why rituximab and LDN work for a subsection of CFS/ME patients and why there are so many family members with similar conditions.

I also read that OCD and autism could be an autoimmune disease in which the brain is targeted by the immune system.

Not that it helps any of us but it would explain a great deal.

 

[DanME]

At least for subset it probably is. RTX, Cyclo and new findings of antibodies are good hints for the autoimmune theory.

 

[digital dog]

Perhaps one day they will be able to test CFS/ME antibodies? I don't know what RTX and Cyclo are so if anyone would like to enlighten me???

 

[TiredSam]

I also read that OCD and autism could be an autoimmune disease in which the brain is targeted by the immune system.

OCD is a condition that really is sometimes associated with childhood trauma or other stressful cause, and can be very well treated with CBT. Those are two things that a certain kind of flocking psychoquacker often likes to claim about CFS/ME, so I don't think an association between CFS/ME and a genuine psychiatric disorder like OCD would be helpful.

 

[digital dog]

Im not sure you have your facts right TiredSam. Researches have found a genetic marker for OCD. Most of the top scientists, therapists and specialists in the field now accept that genetics play a significant part in developing OCD as well as neurobiological,behavioural and cognitive variables.
My daughter has OCD so I am fully aware of the psychoquack!

 

[TiredSam]

I'm well aware that there is a genetic element to OCD, it runs in my family. It can be associated with childhood trauma or other stressful event, and can be well treated with CBT. I don't think there's anything inconsistent with those statements, which one don't you think is correct?

My concern is that an illness where trauma can play a role and where CBT is a valuable treatment (OCD) gets associated with an illness (ME/CFS) where talk of trauma has no place, and where CBT is useful at best in helping patients cope with their illness, but shouldn't be peddled as a cure, especially not in the form of the horrendously inappropriate GET.

 

[digital dog]

I misunderstood your post. I agree that it is usually triggered from a stressful event or illness. My daughter's worst flare was during tonsillitis. We were completely let down by the NHS (another story entirely) so got private CBT and we saw huge gains. She only really flare now when she has a throat infection of some sort.

I understand what you're saying now (sorry Im VERY sensitive when it comes to OCD as it is such a traumatic condition) and concur entirely.

The first thing the doctor suggested for my young daughter was SSRI's. My response was 'over my dead body.'

 

[TiredSam]

I misunderstood your post. I agree that it is usually triggered from a stressful event or illness. My daughter's worst flare was during tonsillitis. We were completely let down by the NHS (another story entirely) so got private CBT and we saw huge gains. She only really flare now when she has a throat infection of some sort.

I understand what you're saying now (sorry Im VERY sensitive when it comes to OCD as it is such a traumatic condition) and concur entirely.

The first thing the doctor suggested for my young daughter was SSRI's. My response was 'over my dead body.'

Well it's easy for misunderstandings to arise in writing on the internet, maybe I didn't express myself clearly. Sorry about your daughter, I quite understand how awful it is to watch your child's life being dominated by this condition. Well done you for rejecting SSRI's and trying CBT first.