Full-length video on the historic scandalous medical treatment of ME by Dr Macintyre

[Abha]

I was told my illness would be caused by Coxsackie B when I was diagnosed in 1986, but I also had polio back in 1955 and I wondered if that would have made me immune to another chronic infection of the same family. No doubt @Hip would know.

I had the Asian Flu back in the late 1950s(very severe)...Professor Gottfries mentions that in youtube videos....4 parts... may have something to do with my illness.

I have had B12 issues(lifelong)/but not recognised till late....The enterovirus I have mentioned.Then there was the malathion contact(resulting from my work as an agricultural science teacher/Zambia/1960s/70s....)....and Hypopituitarism(PTHP) from an assault on me one punch ko'd(never saw attacker but know who it is now)/then attacked again and left unconscious for second time on coming around, after first attack(plus kicking in same incident)/1974.Later I had Ativan(lorazepam) addiction/part of my psychiatric treatment.That nearly killed me!(1982)

It was only in 2014 that I had my PTHP(brain injury) officially diagnosed/confirmed after I diagnosed it myself.I had to do the same with parathyroid disease back in 2005/6.(had tumour removed).ME/CFS patients are seen as mental cases and mainly abandoned but that is crazy/unjust.Psychiatric treatment and ECTs are not the answer...Vitamins/minerals are much safer and more useful plus keeping to a good diet(based on individual needs).Certain drugs could be of use too especially inflammatory ones(for brain/gut).

I was turned down for DLA although Dr Myhill drafted a letter for me.I wasn't able to bring up the organophosphate contact or PTHP diagnosis at that time(around 2006(?)

 

[Pyrrhus]

I was told my illness would be caused by Coxsackie B when I was diagnosed in 1986, but I also had polio back in 1955 and I wondered if that would have made me immune to another chronic infection of the same family. No doubt @Hip would know.

Having a prior Enterovirus infection sometimes provides some protection against another Enterovirus, but there is also a phenomenon called Antibody-dependent Enhancement, where prior Enterovirus infection actually can make you more susceptible to other Enterovirus infections.

And you are probably already aware, but there is a type of ME called Post-Polio Syndrome...

 

[laughin]

@Countrygirl , I am so sorry for your loss of your friend! What great pioneering work she did! We have come a long way!

There is still that attitude in much of the medical community where I live, but in the 7 years I have been housebound I have seen a very gradual change. The Drs here still do not recognize the name ME. ME/ CFS is being Studied by Dr Jarred Youngers at UAB just 5 hours from me! I find that very hopeful!

@laughin You might get some insight, and some gratitude from watching the above video.

@froya , this may interest you.

@sunshine44 , I don't know if you can watch this but it might give you some hope.

Thank you!

 

[bertiedog]

@Countrygirl Thank you for posting the link again, it is a truly shocking video but I am not convinced that too much has changed here in the UK regarding attitudes of doctors to ME. Actually I hope I am wrong.

I am so sorry to learn of Dr Macintyre's death especially as she was your friend. She was very brave to make this video.

It was sad to see Lynne and her family and the circumstances she found herself in. Was there ever confirmation of what she died from after her death and if in fact there was, I wonder were there any comments from doctors who had supposedly "looked after" her?

Did Dr MacIntyre carry on thinking it was something like Coxsackie B that was causing the illness at least in a good number of ME sufferers? I had very high titres to Coxsackie when tested in 2015 btw and my gut is now one of the most troublesome of my symptoms.

Pam

 

[Hip]

I was told my illness would be caused by Coxsackie B when I was diagnosed in 1986, but I also had polio back in 1955 and I wondered if that would have made me immune to another chronic infection of the same family. No doubt @Hip would know.

I think a prior poliovirus infection may provide some increased resistance to other enteroviruses like coxsackievirus B, but it would not guarantee that you will not get these or other enteroviruses in the future.


There was one study which found that Estonia (which uses the live attenuated poliovirus vaccine) has 3 times lower prevalence of type 1 diabetes compared to Finland (which uses a killed poliovirus vaccine).

Because T1D is linked to coxsackievirus B4, it was suggested that the live vaccine (which is closer to a real poliovirus infection) confers some cross-protection against this diabetogenic Coxsackie B4 virus.