Likening ME to AIDS is irresponsible

Picture of Hillary Johnson giving a speech at the Invest in ME Conference in London, May 2011I recently received my copy of the conference DVDs from Invest in ME, which had its annual conference in London in May, but held up distribution of the DVDs because one of the presentations contained clinical trial findings which are still under embargo (they do not appear to be taking new orders for the DVD set at present, probably for this reason). Of the talks I have already watched, there is an excellent, 30-minute talk by David Bell, a physician whose practice in Lyndonville, New York, treated many of the victims of an outbreak of ME in the 1980s; he talked about “health identity confusion”, in which patients who are still very ill might report that they are in good health as they have adapted to their changed life circumstances, and might be carrying on what they consider productive lives mostly from bed, as does one patient he discussed. This kind of behaviour may skew the outcome of studies, and indicate that a proportion of ME sufferers are healthier than they really are. However, there was one talk that needs a serious answer, as it made claims which sound a lot like irresponsible scaremongering.

That talk was the one on Disc 4 by Hillary Johnson, best known for her book Osler’s Web, which gives the story of the upsurge in cases of ME as it happened in the United States, with particular focus on the work of Elaine De Freitas, who believed she had found evidence of the HTLV retrovirus in many of the ME patients being seen by Dr Bell in Lyndonville and Dr Paul Cheney in North Carolina. However, the CDC did not take her work seriously and failed to reproduce her results, in large part due to shoddy treatment of blood samples, but her work was also seriously challenged by British researchers who were focussed on an enteroviral cause. Her work eventually ran into the ground as she lost funding and her own health deteriorated. Johnson’s talk at this IiME conference focussed on De Freitas’s story as a parallel to the present controversy over the XMRV retrovirus.

Towards the end, however, she diverged into naming three “elephants in the room”, among which was “a decades-long near-silence about the similarities between AIDS and what has been called chronic fatigue syndrome”. Judy Mikovits, the researcher at the Whittemore Petersen Institute who was recently dismissed, was quoted as calling ME “XMRV AIDS” or just “X-AIDS” and the various viral infections that ME patients suffer from “opportunistic infections” or “co-infections” akin to those that define AIDS. Johnson went on to suggest that XMRV was highly contagious, and could spread in any bodily fluid, including blood semen, urine, tears, saliva and breast-milk, making it transmissible between people living in the same house and from mother to child; she also quoted Mikovits as claiming that this was the first retrovirus which could be transmitted by aerosol, i.e., by breathing.

If one considers basic facts of the history of ME, particularly here in the UK, one would realise that several of the preceding claims are ludicrous. People have lived in the same dwelling as someone with very severe ME, or spent almost all of a decade or two caring for someone who is very severely affected, and have not become affected at all themselves; anyone familiar with the ME community will know of several people in both categories. There have been some cases of people becoming ill with ME after caring for a severely affected relative for some time, but the likelihood of becoming ill appears to bear no relation to how severely ill the original patient is or was. Thus, the suggestion of ME spreading by mere proximity to a sufferer is shown to be false, or at least not applicable to the majority of cases. Similarly, it is not reported that any of those who acquired ME as children had received blood products and it is reasonable to assume that the majority of those who acquired it at 13 or 14, let alone younger, had not been sexually active (one of them stated this explicitly in a letter that was later published in the British media). If these people had been sexually abused by someone and they knew that person was ill, at least some of them would surely have reported this.

One might ask why a huge amount of money was spent on HIV/AIDS in the 1980s compared to any other illness, not just ME: it was because it was known to be a public health hazard because it had entered the public blood supply, and had an enormous stigma attached to it: there was the widespread perception that you could get AIDS through any close contact, not just sexual contact — through sitting on the same toilet seat or sharing food, for example — and people with it faced terrible discrimination, however innocently they acquired the virus. Children, for example, have been refused school places (even very recently) because of fears of an outcry from other children’s parents; people with HIV find it more difficult to find partners, for obvious reasons. To suggest, on the basis of wholly unproven science, that ME is an easily transmissible disease that you can acquire from simply catching the outgoing breath of an affected person is to lay sufferers open to terrible stigma and social isolation for no good reason. Imagine how distressing it could be to have some refuse to come anywhere near you, while others accuse you of being a fraud or of exaggerating — this is what could happen if the theories being advanced here are taken seriously.

Both Johnson and Mikovits appear to be overlooking the major differences between ME and AIDS, which are far too great for one to be called a subset of the other. Although it does have neurological effects, AIDS is primarily an immune deficiency disease, exactly as its name and that of the virus that causes it imply. It comes on gradually over a period of years, such that a person may have HIV in their system for years before showing any symptoms. ME is primarily a neurological disease and evidence has been found of brain injury in sufferers; it also comes on suddenly, such that sufferers can often remember the hour they first felt ill. People who are exposed to an enterovirus may get ill or they may not (and they probably will not), and in the latter case they will not remain infectious or have to take anti-viral drugs; exposure of adults to HIV that never produces AIDS, if left to develop, is very rare. Although people with ME do have immune dysfunction as well (not to the same extent as people with full-blown AIDS, even in the most severe cases), that is not the most prominent symptom of ME. If there is such a thing as non-enteroviral, auto-immune ME (even if triggered by another illness such as flu or mumps), then the patient poses no more of a long-term risk of infection once their initial illness has passed than someone with Multiple Sclerosis, Motor Neurone Disease or any other long-term neurological illness.

This scaremongering is, in addition, quite unnecessary when raising money for biomedical research. The facts about ME should be enough: in particular, the devastating impact it has on children’s lives, sentencing young girls, in particular, to years or decades of pain-ridden isolation in dark rooms should be more than enough to make people aware of how serious ME is; and while the experiences of women like Lynn Gilderdale are those of a small minority, 25% of sufferers are at least housebound and suffer other debilitating symptoms such as pain (sometimes so extreme that morphine has no effect on it), light, sound and touch hypersensitivity, constant nausea or flu-like sickness, and cognitive and physical disability. There is clear evidence of transmissibility, but this happens at the beginning and there are ways of drastically reducing enteroviral contagion, such as better hand hygiene after using the toilet — simply avoiding being around ME sufferers will not do anyone any good. Films such as Voices from the Shadows, currently available for streamed online viewing in North America and showing in the UK at the end of the year, depict what ME can do to people’s lives and expose the outrageous consequences of ignorance, including that of the medical and social care professions, about the reality of ME. Pointless scaremongering will only make sufferers’ lives even more miserable than it already is.

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