United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

was thinking about the possible move from PEM to PESE issue today and have mixed feelings as PESE doesn't really mean anything unless clinicians know what all the symptoms are. ie not just fatigue.

 

Unless things have changed significantly recently - & they might have thanks to covid - a lot of docs have no idea what PEM is anyway.

A few years back when talking to a GP about something else I mentioned PEM. Then asked him if he knew what PEM was, he didn't. When I explained he said he'd never even heard of it before.

It's a real shame I ended up moving home and therefore surgeries. This guy didn't have any special interest in ME but was open to learning more.

 

At one point White said that PACE looked at CFS, not ME. They say whatever they need at any time.

 

It's also confusing because it suggests exacerbation of symptoms that were present pre exertion but doesn't allow that the exertion may produce symptoms that are specific to the post exertion state, i.e symptoms weren't there before the exertion and only occurred following the exertion. PEM at least has the merit of being non specific about symptoms or the relation of symptoms pre and post exertion.

 

Good point, if I overexert I get a whole new gamut of symptoms.

 

I vaguely remember that Hammond's Private Eye articles are usually not so bad. Then he goes and writes horrendous drivel somewhere else. I wonder if there's a reason for that?

 

Could be mind-body interaction?

 

For me it's always been about bringing on 'the worst of the worst'.

 

Weird, my knowledge of virus is limited but they basically need to get into your cells ("key" if you like) and then use the host cell to replicate the virus --- via the viral DNA/RNA ---- virus don't invade the mind, just the cells they can replicate in!
The mind thing is no more relevant than it is in any other illness ---- telling a patient that you have a disabling illness and we don't current know how to treat it may well have a psychological effect, but it's an effect common to all illnesses ---- not just ME/CFS.

Dr Phil Hammond:
"A virus doesn't distinguish between mind and body, and neither should we. No chronic illness is ever all in the mind or all in the body; they are interwoven. Conveniently for the government, brain fog and poor memory are common consequences of post-viral illness."

 

Pretty dumb really. True, hurt does not necessarily equal harm, but that in no way absolves people from properly checking that it actually is not. I detest the way these people very consciously exploit the ambiguity of their language.

 

Psychological hurt can significantly harm

 

Of course.

 

I think any healthcare professional in this field who claims "hurt does not equal harm" should have to provide proper evidence.

How do they know? Is there any way of telling up front who will merely be hurt and who harmed?

Exactly what definition of hurt do they use and what definition of harm? Are these definitions meaningful to their patients or their patients' guardians?

What safeguards are in place - especially by way of long term follow ups - to ensure that what appeared to be hurt at the time wasn't actually the early signs of harms?

Edit -spelling

 

My husband is a virologist. The forum is no place to put his reaction to someone who could say this especially when he realised it was a doctor not a journalist

 

This is another way they are presenting us as timid children who won't take their medicine. We can tell the difference between a procedure that makes us hurt for a few days and one which causes a deterioration of our illness.

Doctors who actually interact with ME patients speak about how stoic their patients can be. Workwell said the healthy controls complained about the CPET testing (even though they did it) but said the patients would have crawled across hot coals to get an answer.

 

Yes indeed.

I know there has been much speculation about about PH’s behaviours. A professional troll or terrifically ignorant?

On the off chance or perhaps hope of the latter, the last two decades people have been very publicly endeavouring to explain some stuff to him.

So with that in mind I do hope this example clears it all up for everyone.

 

I think Hammond may have a random-sentence-generator app.

 

I tried to make sense of that, but still don't know what he's trying to say.