Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study by Knudsen et al. 2012

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.

 

Really it's just another attempt at reworking of the original message from Wessely et al that ME CFS patients who are members of a support group are more likely to become chronically ill.

The fact he was saying this 2 or 3 decades ago when there was dial up compuserve at best, many people didn't have access to a local support group or were too unwell to attend anyway and still people became chronically ill rather disproves his claims.

The only "support" people had from the medics was either benign neglect or pushing them into CBT & GET. Most ME patients had little exposure to anything that counteracted this.

As Sharpe himself said, the BPS treatments were the only show in town. Even with a captive audience kept in ignorance their treatments have failed. Spectacularly. If PACE proved anything it proved that.

Time to move on from blaming ill health on personality traits. Unless you can name even one long term health condition originally thought to be biomedical in origin that proved to be down to a pathological personality. Claiming ME patients might be chronically ill because of personality is right up there with racism, sexism, homophobia.

 

Yea it's sad at some level that we have to rely to translators like @Jonathan Edwards - grateful for the insight though.

 

Wins the ME internet for the best analogy ever!

 

They have got this upside down. I have a few other medical conditions now as I age and I would love to be able to go to the equivalent of S4ME for them to get in depth information and help to understand the latest research.