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Without severity, this study is meaningless. I can’t go to the doctor so I don’t, and she won’t come to me. During the pandemic I was able to use my GP when necessary (e.g. for migraines, bacterial infections). Now I use private online consultations. For me the lack of online access means I...

A wonderful letter. Trish, you are amazing. How incredibly depressing that this needs to be written though. What other medical condition is managed by health professionals so determined to ignore national guidelines in favour of unevidenced speculation and pseudoscience? And the charities...

Other way round for me - migraines are triggered by PEM. My migraines respond well to triptans fortunately. If I’ve run out of triptans and have a bad migraine then yes the migraine can trigger/deepen the PEM, especially when my ME is in a v severe phase (I’m currently moderate/severe but it...

I often get this as part of PEM (severe/ v severe). The symptoms themselves are exhausting, so I have no choice but to stop eating until it goes away, and it goes away once my PEM remits. I imagine that if I ever develop unmanageable gastric problems it will be because I get stuck in a loop...

Indeed, I think it would be really valuable to include the views of adults looking back at their childhood experiences. I was too traumatised as a child with ME by my treatment by the system, and too much in survival mode, to have participated in a study like this, never mind to have given any...

Thanks @Valerie Eliot Smith. That’s extremely helpful. Am I right in thinking that “unlawful killing” is available to coroners as a conclusion in cases of criminal violent deaths or of gross negligence manslaughter, though that conclusion is very rarely returned?

Utterly incomprehensible. “What level of physical activity triggered a worsening of symptoms?” With the options of “no physical activity is possible” and “very little physical activity”? What on earth is “very little physical activity”? Rolling over in bed? Using the toilet? Brushing...

That article managed to miss the obvious point that for many, ADLs are the maximal exertion that can be tolerated. On an average day, I walk to the bathroom, sit down and brush my teeth, stand up and walk back. On a bad day, I have to be helped to shuffle to the lavatory. On a very bad day, I...

There’s a difference between sickness behaviour and health-help-seeking (to use the awful jargon). Women often push through minor illnesses in their daily lives (hiding symptoms) but there’s a lot of evidence that women generally go to the doctor more than men (seeking help). Hence the...

The difference between the LDN fans and the GET defenders is that GET cannot possibly work in anyone with ME. This illness is defined by post-exertional malaise. If your chronic fatigue is relieved by exertion, it’s not ME. LDN, on the other hand, could logically work for some very small subset...

This dramatisation came years after everyone - the legal system, the media, politicians- accepted there had been a massive miscarriage of justice and even so still hardly anything had been done to compensate or indeed exonerate all those affected. We are many, many years away from that. We are...

I think we all know how the real attention / fear / avoidance cycle works in ME: Look at me! I’m the doctor with all the answers! Oh no… my patient doesn’t seem to be getting better. What if I’m wrong after all? I’ll just ignore all the science being done, blame the patients for being unwell...

Why are MEA asking severe - never mind very severe - patients to waste non-existent resources commenting on material which disregards the NICE guidelines and is both absurd and offensive? MEA should be providing their own rebuttals, and offering a structured way for v/severe patients - and...

"stakeholder consultation... expert advice... professional recommendations" - sounds quite a lot like what Adam was suggesting? Can Charles Shepherd write to Reading Well to point out that their current list of titles includes "self-help interventions" which are not "recommended within National...

Patients with extensive loss of function and additional symptoms with of unknown cause are diagnosed with chronic fatigue syndrome (CFS)/ myalgic encephalopathy (ME). No mention of PEM. Why would standardising care between idiopathic chronic fatigue and “CFS/ME” seem promising? The way forward...

Cochrane aren’t beyond a subject access request. There are several individuals (including commenters above) about whom Cochrane staff might have committed some choice nuggets to email.

I don’t know anything about how muscles work, but for me it seems that my underlying muscle strength is quite normal for a sedentary person. On a good day, I can access that strength. But most of the time I have almost no effective strength at all and am often too weak to (for example) lift a...

Top journals need to start earmarking space for null result studies and for replications (successful or otherwise). It’s the only way this can start to be addressed. I’d also like to see more space set aside for (peer reviewed) statistical reanalysis of data from studies previously published...

Carefully phrased to give the impression the insurance company paid, without actually saying so. Did the insurers pay, or did patient have to? If the medical repatriation company was paid a bespoke rate, whether by the insurers or the patient herself, it’s less or a surprise they were willing...

Paul Garner has indeed been touting his free speech credentials: https://www.livpost.co.uk/p/tinker-tailor-teacher-spy-the-liverpool Sending death threats is absolutely unacceptable, and it's quite wrong (and illegal) for anyone to have made physical threats against Professor Garner or anyone...