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Abstract

I just noticed that Prof Crawley is also no longer listed as a medical advisor to the Sussex and Kent ME/CFS Society. How will they survive with only five medical advisors? https://measussex.org.uk/about-us/medical-advisors/ This secretive local charity is in danger of no longer having more...

Also as has been already pointed out, malnutrition and dehydration potentially cause all sorts of problems and it is unclear until they are reversed what the underlying eating/drinking/digestive functioning is.

I couldn’t face reading this, but feel it is important to note we have no idea why some people recover and some don’t, also we have no idea what levels of significant relapses occur in adults who previously recovered when children or adolescents. Dealing with such a poorly understood condition...

I have no idea about current waiting lists, but when I provided a community service we tried to see urgent swallowing referrals the same or the next day, though given we did not have on call or weekend staffing that only included weekdays. There was a similar response in patient. However even...

I assume Speech & Language Therapist. Our role would be in the assessment, management and if relevant treatment of the oral and pharyngeal stages of eating/swallowing. My knowledge is over twenty years out of date, but a SALT assessment would address the safety/efficiency of swallowing and for...

Is this something that can be added to the complaints about the original paper pushing effort preference as the main explanation for ME/CFS, if Dr Walitt is now backtracking?

Missing Millions France share the following French article on their Facebook page Un hôpital anglais dans le collimateur de la police après la mort d’une patiente atteinte de fatigue chronique (Google translate - An English hospital in the crosshairs of the police after the death of a patient...

I have not read the article, but I wonder if it is ever attempted to distinguish between avoidance because you are afraid and avoidance based on a rational evaluation of risk. If there is risk, the fear aspect is almost irrelevant, just considering whether there is any emotion attached to...

Thank you @Eleanor for your clarity.

You do see similar debate amongst the deaf community about cochlear implants. I do not know enough to do the issues justice but some see the surgery as an attack on their identity and undermining the deaf community.

I also got an email recently thanking me for my donation, David said he could not remember if he had previously thanked me via Facebook messenger which is how we would normally communicate, but he was sending the email in case he hadn’t.

I feel the lack of ‘specialist care’ is a bit of a red herring. The main current problem is the failure of medical services to seriously listen to the patient to accommodate sensory issues and to introduce alternative feeding methods when needed to avoid malnutrition and dehydration. This does...

It is interesting that, what others are envisaging as an adrenaline rush, I liken to an endorphin high. My experience is that when I find myself able to engage in more physical activity than normal I can experience a high that results in my doing far too much, which is also associated with...

False beliefs and unevidenced theories. But yes even if we were ‘malingerers’ why treat us with less compassion than those with other conditions?

This is the crux of the matter, these severely ill patients are suffering and even dying because their care is based on false beliefs and unevidenced theories rather than acknowledging our ignorance and responding sensibly to the presenting symptoms.

I was able to access the article, but it presumably this is just one of the few free articles.