dratalanta
Senior Member (Voting Rights)
What the authors should be asking themselves is just how bad the service from doctors must be that patients would prefer to get advice from the internet.
If the plumbing trade had been overtaken by a cult promoting the idea that clogged lavatories - and only clogged lavatories - could be resolved through the power of prayer, one might expect to find more activity on forums discussing the declogging of lavatories than those explaining, say, the installation of showers. And one might also expect to find heretical plumbers furtively helping desperate householders on those forums with information on how to access a U-bend.
On patient forums, we not only have the chance to share our experiences; we can also speak directly to experts like @Jonathan Edwards. In any other disease, leading researchers would be far too busy interacting with other specialists to hang out with patients on a web forum. But thanks to the prayer-declogging cult, some patients offer a more astute and informed audience than is found in certain parts of the medical profession, and forums like this are the beneficiaries of that expertise.
The authors should be invited to reinterpret their paper as a measure of the unpaid diagnostic and investigative labour being undertaken by patients and carers, an additional burden which falls specifically on this illness. The paper suggests that medical care for ME is wildly deficient, and has provided a rough numerical measure of just how deficient our medical support is relative to other chronic illnesses. Much as I appreciate all your insights here, I look forward to the day when my visits to S4ME are rendered unnecessary by the provision of actual, informed medical care.
If the plumbing trade had been overtaken by a cult promoting the idea that clogged lavatories - and only clogged lavatories - could be resolved through the power of prayer, one might expect to find more activity on forums discussing the declogging of lavatories than those explaining, say, the installation of showers. And one might also expect to find heretical plumbers furtively helping desperate householders on those forums with information on how to access a U-bend.
On patient forums, we not only have the chance to share our experiences; we can also speak directly to experts like @Jonathan Edwards. In any other disease, leading researchers would be far too busy interacting with other specialists to hang out with patients on a web forum. But thanks to the prayer-declogging cult, some patients offer a more astute and informed audience than is found in certain parts of the medical profession, and forums like this are the beneficiaries of that expertise.
The authors should be invited to reinterpret their paper as a measure of the unpaid diagnostic and investigative labour being undertaken by patients and carers, an additional burden which falls specifically on this illness. The paper suggests that medical care for ME is wildly deficient, and has provided a rough numerical measure of just how deficient our medical support is relative to other chronic illnesses. Much as I appreciate all your insights here, I look forward to the day when my visits to S4ME are rendered unnecessary by the provision of actual, informed medical care.
