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

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Gulf War Syndrome real, Institute of Medicine concludes

Messages
26
When I first had m.e, about 13 years ago now, I met someone else who had had it for some years and was almost "recovered" at that point. She had been a patient of Prof Brostoff in London and he used these brain scans. She had the very same story, her scan showed dramatically different blood flow. She recalled that one day at his clinic there was someone else who was suffering from fatigue, who was just a bit run down and he compared their 2 scans as it showed the difference, dramatically, between fatigue and m.e. So this has been known for a long time, but it has been ignored.
 

Jerry S

Senior Member
Messages
422
Location
Chicago
Excellent lecture! Dr. Goldberg does a good job explaining the neuro-immune disease approach to disorders and syndromes, in general, as well as its relationship to autism. Thanks for posting this, natasa778!
 

leelaplay

member
Messages
1,576
When I first had m.e, about 12 years ago now, I met someone else here in London who had had it for some years and was almost "recovered" at that point. She had been a patient of Professor Jonathan Brostoff here in London and he used these brain scans. She had the very same story, her scan showed dramatically different blood flow. She recalled that one day at his clinic there was someone else who was suffering from fatigue, who was just a bit run down and he compared their 2 scans as it showed the difference, dramatically, between fatigue and m.e. So this has been known for a long time, but it has been ignored.

Hi Noro; welcome to the forum

I find it so interesting that Dr Brostoff showed you brain scans that showed the difference between normal fatigue and ME/CFS 12 years ago. Do you know if he published anything on this?

Is that this Dr Brostoff? And has he helped you?

Professor Jonathan Brostoff, Professor Emeritus of Allergy and Environmental Health, Kings College, London; and Founder of the Allergy Research Foundation

Professor Jonathan Brostoff, The Hospital of St John and St Elizabeth
 

JillBohr

Senior Member
Messages
247
Location
Columbus, OH
Excellent lecture! Dr. Goldberg does a good job explaining the neuro-immune disease approach to disorders and syndromes, in general, as well as its relationship to autism. Thanks for posting this, natasa778!
Oh Jerry, now I feel guilty for not thanking Natasa when I should have. Thank you Natasa for posting that link. I hope everyone here sees it. Jerry, I am glad you enjoyed it as well as everyone here that commented on it.
 

natasa778

Senior Member
Messages
1,774
Thanks for the comments, I am glad people find it interesting and informative. IMO the only thing Dr Golberg got wrong there is that even original Kanner children were riddled with medical issues, so even those did not have 'pure' autism (there is no such thing).

In fact the original Kanner child, Donald T (the one Kanner based his work on) in his teenage years developed juvenile arthritis, was treated with IV gold salts, and most of his "autism" symptoms went away!
 

fred

The game is afoot
Messages
400
Professor Jonathan Brostoff, Professor Emeritus of Allergy and Environmental Health, Kings College, London; and Founder of the Allergy Research Foundation

Why does this make me shudder? Please tell me it's an irrational Pavlovian response which has no relevance to the subject under discussion.
 
G

Gerwyn

Guest
Why does this make me shudder? Please tell me it's an irrational Pavlovian response which has no relevance to the subject under discussion.


does anyone know what the spect abnormalities in me patients are and are they quantifiable?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Professor Brostoff is one of the good guys. He has even worked as a medical expert to help individual patients fight the Wessely lobby if they needed medico-legal help. Quite happy and willing to stand up to them.

I was one of his patients. One of his advantages is that he is still very respected in the NHS and can be helpful in convincing useless GP's to do more. He certainly did for me. Sadly, when I saw him last he had given us his NHS practise and would only see people privately.

If you go to the Invest in ME conference you will probably see him there.

I've also discussed the SPECT scans with him. He published with Costa. Could not get any funding to do further work.

Costa DC, Brostoff J, Douli V, Eli PJ. Brainstem hypoperfusion in patients with Myalgic Encephalomyelitis-Chronic Fatigue Syndrome. Eur J Nucl Med 1992 19:733.

Brainstem perfusion is impaired in chronic fatigue syndrome. DC Costa, C Tannock and J Brostoff. Quarterly Journal of Medicine December 1995:88:767-773)

Brain MR in chronic fatigue syndrome. Greco A, Tannock C, Brostoff J, Costa DC. AJNR Am J Neuroradiol. 1997 Aug;18(7): 1265-9.