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I had a pop up DecodeME ad on the Guardian website

Yes @SNT Gatchaman my gut reaction to that reference to action centred coping was that yet again they are having cake and eating it.

If only some peers in the USA would have the courage to wheedle him out of the IACFSME. This professional mutual respect default should only go so far. Surely at some point they should look behind the curtain.

Spot on description. I will try to remember for future deployment.

yep. And also something called behavioural activation*. Both described as “evidence based” :whistle: * which seems to be an iteration of CBT https://en.wikipedia.org/wiki/Behavioral_activation

What about the idea that stages possibly don’t all need to be viral reinfection or a new viral infection. Things on my possible list for gradual onset include a nasty fall, menopause onset, very stressful caring responsibilities.

Instead of x hours of ACT many people could benefit from x hours of practical support eg with advocacy to deal with financial or accommodation hassles or in getting shopping, cleaning, etc etc. do that and any energy freed up is available to do whatever the PWME chooses to do

Ok I was thinking the chap who got it sorted would have been vulnerable customers team. I think with general customer service teams unless you say explicitly you want to be dealt with by vulnerable team the lightbulb doesn’t go off for them from the situation you’re describing.

Googling to see if it is a Sham would fit well with a misperception of malingering, could be work colleagues or managers for example.

I would say anyone with ME who has spells of being housebound or is largely housebound or more severe should be on telecoms company vulnerable customer list and deal with vulnerable customer team only. I’m guessing the second team you were put through to were the vulnerable customers one @Simbindi

Sums up nicely what I’ve been thinking @ME/CFS Skeptic. What seems to be happening in Germany gives me hope that it can have a ripple effect back to the UK. Thank goodness we have DecodeME here to give us some hope.

Wow do these people think they are our parents!!! Eta. I’m likely old enough to be their parent

Ironic to have Kaiser Permanente presenting. I remember they really dragged their feet for years when @Webdog was pursuing them to change their web content on ME.

In the olden days when I was studying languages these were known as false friends.

Could be gradual onset, doesn’t mean you don’t have any infections just that they aren’t acute enough to be taken as anything serious. Also ME symptoms being attributed to depression so getting that diagnosis instead.

He seems all over social media- doesn’t mean he’s a reliable source. Discussed here on the forum earlier this year. https://www.s4me.info/threads/covid-19-vaccines-and-vaccinations.18066/page-55#post-457833

For those forum members with fewer decades on the clock. (I did have a manual choke on my first car) https://en.wikipedia.org/wiki/Choke_valve#:~:text=By%20restricting%20the%20flow%20of,chamber%20during%20cold%2Drunning%20operation.

Furthermore we did half a job

Dear forum friends please don’t waste your valuable energy in that part of Reddit.

Great job @Grigor and I love the relationship you have with the real Grigor xx