Michael Sharpe is at it again

[Mary]

https://twitter.com/i/web/status/1009477954425016321

There are lots of replies to him which he deftly bounces back, never addressing the issues - no surprise!

 

[Moof]

Honestly, the minute a treatment is found that works, I'm really happy to tell him what I want. Although...give me half an hour, I'd want to tell my friends and wave my arms about a bit first. Oh, and champagne.

 

[keenly]

https://twitter.com/i/web/status/1009477954425016321

There are lots of replies to him which he deftly bounces back, never addressing the issues - no surprise!

Ask a simple question; how does the human body produce energy?

 

[Moof]

Whilst he knows fine well that there's no proven drug treatment yet for ME, which makes it somewhat difficult to articulate what we want, it's very easy to offer a positive vision for care.

• Listen to people; having pain, suffering and grief acknowledged is enormously important.
• Provide symptom relief when possible.
• Understand that many patients need social and financial support, and help them get it.
• Work with patients instead of dismissing or gaslighting them; you might learn something.
• Offer psychological therapies to patients who want them, but don't pretend they're curative.
• Help argue for more research funding.
• Offer patients support in challenging bad science and bad public policy.

In other words, ask medical professionals to just do their sodding jobs properly.

 

[Cheesus]

We want a treatment that is effective.

I'm amazed he even had to ask. This is really simple stuff. What was he expecting the answer to be?

 

[Diwi9]

Whilst he knows fine well that there's no proven drug treatment yet for ME, which makes it somewhat difficult to articulate what we want, it's very easy to offer a positive vision for care.

• Listen to people; having pain, suffering and grief acknowledged is enormously important.
• Provide symptom relief when possible.
• Understand that many patients need social and financial support, and help them get it.
• Work with patients instead of dismissing or gaslighting them; you might learn something.
• Offer psychological therapies to patients who want them, but don't pretend they're curative.
• Help argue for more research funding.
• Offer patients support in challenging bad science and bad public policy.

In other words, ask medical professionals to just do their sodding jobs properly.

It's utterly sad that a psychiatrist seems completely daft/incapable of grasping these basic concepts. People with ME are not exceptional to any other group with chronic illness. He has an opportunity to be on the right side of history, but his narcissism (and I don't lightly throw that around) is in the way.

 

[HowToEscape?]

Give back the $5M he defrauded away from real science.
But I’m afraid my abundance of tact won’t do for this occasion.

 

[boolybooly]

This is facile mockery which is why I say Sharpe is a trolling careerist shill and does not have the credibility or authority or good motivation to ask such questions and expect an answer.

Though the question stands on its own merits and the answer is already a matter of record and the proper approach is pacing activity below thresholds for PEM and relapse, not GET, also minimising stress not applying coercion.

In the face of idiot psychologists who seek to ingratiate themselves with political and financial powers by abusing ME patients there is no doubt that for ME as with Brexit, no treatment is better than the wrong treatment.

 

[Mithriel]

When did patients have to find a treatment for their disease? That is the job of doctors and researchers. Even if the PACE trial's results were accurate and not fraudulent only 20% recovered (even if that was a true recovery as everyone else except PACE doctors understand the term).

So why is there not lots of money going in to find a treatment for the 80% who remained sick?

 

[Tally]

What was he expecting the answer to be?

He wanted to prove we are a bunch of negative bitter people who fail to advocate for what we want and instead only focus on being angry and trashing what we don't want. He also hoped to convince us to turn our focus away from criticizing PACE.

I really don't know why we even waste our time with him.

 

[Mary]

He wanted to prove we are a bunch of negative bitter people who fail to advocate for what we want and instead only focus on being angry and trashing what we don't want. He also hoped to convince us to turn our focus away from criticizing PACE.

I really don't know why we even waste our time with him.

I think you're absolutely right. I showed his tweet to my sister (who does not have ME/CFS), and she said it's a red herring and there's no point in answering his questions - they're not done in good faith, and that a response to him (if any) should ignore his questions and instead focus on him and why was he still defending PACE.

 

[Hazeleyes99]

There is an episode of Black Mirror in the newest season where a device is worn by the doctor linking them to the patient, where they feel everything the patient feels. That alone would probably spur more targetted research and understanding and positive treatment outcomes than anything else.

 

[Mary]

There is an episode of Black Mirror in the newest season where a device is worn by the doctor linking them to the patient, where they feel everything the patient feels. That alone would probably spur more targetted research and understanding and positive treatment outcomes than anything else.

I have often wished doctors (and others!) could just feel what I do for a day. Though to really get the full ME/CFS experience, more like a month or longer, so that they begin to get a glimpse of its unremitting awfulness.

 

[lilpink]

I call it an 'in my shoes button' and have long yearned for one.

 

[CFS_for_19_years]

Best loved reply:

https://twitter.com/i/web/status/1009496281998229504