Person with ME


Thank you for this opportunity to comment on Sophia's tragic death.

When Sophia's death is viewed relative to Gulf-related illness, or Gulf War syndrome as it is commonly tagged, the time that she spent in Africa assumes crucial importance.

I have been under treatment for onchocerciasis contracted in Arabia between 1983 and 1986. Treatment was at my own insistence. Following my GP's referral to the Dept of Infectious Diseases at the Royal Free Hospital TO BE INVESTIGATED AND TREATED FOR ONCHOCERCIASIS AND NOTHING ELSE, I was given an initial appointment at THE FATIGUE CLINIC CURRENTLY INVOLVED IN THE PACE TRIAL.

I was able to provide the clinic director with evidence of exposure to onchocerciasis, with which my ambulance chaser would have destroyed the Royal Free had they denied me the treatment that I insisted upon. Consequently, I received the treatment. But Gulf War veterans and travellers like Sophia, diagnosed with ME/CFS, but who have exactly the same symptoms and travel history as me, would have been treated with inappropriate CBT/GET and quite possibly included in the PACE trial.

I don't know where or how Sophia spent her time in Africa or how long she was there. She was there long enough, however, to contract malaria twice. It therefore follows that she was also there long enough to contract a range of endemic helminth infections that would likely have been too minimal to be detected by assay on her return. She would have needed to have been treated empirically.

My treatment at the Royal Free was a 12 mg dose of ivermectin every 6 months for a couple of years, which will not be familiar to ME/CFS cases. But, every 6 months, I also took a six week course of 200 mg/day doxycycline which ME/CFS/GWS cases will recognise. This is to kill Wolbachia bacteria that infect the helminths and interrupt their reproduction cycle and accelerate their deterioration and death.

I shall always suspect that Sophia returned from Africa with one or more helminth infections that were not diagnosed. Renal failure is a frequent cause of death resulting from schistosomiasis; a disease that is cured by a single day's treatment with praziquantel.

The worrying infection for ME/CFS cases, however, is onchocerciasis. Britain is endemic for 2 species of zoonotic Onchocerca, and the blackfly vectors that transmit zoonotic onchocerciasis also transmit human onchocerciasis. Furthermore, the climatic conditions that support the transmission of human disease and zoonotic disease are identical. Thus it is important to determine exactly what happened to the shed loads of human onchocerciasis imported into Britain with mass immigration from East Africa in the late 60s and early 70s. Also, since it is known that onchocerciasis was imported into the New World with slavery, what happened to human onchocerciasis in the USA, where 3 species of zoonotic onchocerca are endemic.

Not such a small point is that onchocerciasis presents differently in different races. People born and bred in hyperendemic zones can tolerate a much higher parasite load than travellers exposed to the disease for the first time as adults.

The Royal Free serves a wholly cosmopolitan area of London and the rainbow of races in the waiting areas of their outpatient clinics reflect this ethnic diversity. Except for the CFS clinic of course, where 95 per cent of the patients are WHITE! I kid you not.

With condolences