UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

In scope, theysay:

I expect that anything outside of their scope will be excluded, so those filling in questionnaires should be aware of it:

 

Okay, a quick skip through that thread makes it sound to me like it is a way of finding the shortest route from patient to therapist possible, bypassing everything and everyone else. I didn't have the heart or the energy to give it a close reading, because it's quite a long thread.

 

I looked up who James Lind Alliance are. It seems they were set up by Iain Chalmers of Cochrane, together with John Scadding who was dean of Royal Society of Medicine at the time and is probably not a key player. Subsequently the JLI became a sort of quango within NIHR it seems. My guess is that it is just another face of the same Cochrane/NIHR community that have made such a mess of quality control while claiming to be all about quality control. Getting a priority setting partnership set up through JLI is probably pretty much the same process as getting a Cochrane review set up. People with interests in particular treatment approaches bid to set research priorities rather than to assess evidence for guidelines.

 

Priority Setting Partnership, presumably.

 

I don't always see what's right in front of my nose these days. I'll blame it on my health and old age.

 

What is meant by "funds the infrastructure", as that is apparently what the NIHR does with the JLI. That looks as though it is only a proportion of total running costs. Is it clear whether there is other additional funding and, if so, its source?

 

The thought that has occurred to me is how can you do a PSP on a random collection of symptoms that may or may not be related, and expect to get proper input from patients? And ESPECIALLY when you seem to create a new term Medically Not Yet Explained Symptoms? And then seek to exclude patients with specific conditions that might be considered MNYES providing input, just because they have a PSP for their specific condition?

I thought this looked strange to start with, it's now looking like an attempt to avoid organised patient groups have any input.

 

Bolding mine - I've bolded the symptoms they've listed that are very common among people with thyroid disease. These are just a few of the many, many symptoms you can get.

Not a single endocrinologist on the committee that I noticed. Just saying.

 

It's clearly a re-branding without substantial change. Like sticking "bio" in front of psychosocial and keeping everything else the same. Because people don't buy their BS and they think the packaging is the problem, kinda understandable considering it's a bunch of hot air.

I hate the duplicity. It's grotesquely unethical and unbecoming of medical professionals. These people have proven themselves to be unfit for the responsibilities of the job. What a complete waste of resources. Might as well just built a damn money pit and light it up.

 

@Kalliope 's posts explain the likely future treatment for thyroid conditions in this thread, specifically posts #8 and #19 :

https://www.s4me.info/threads/general-thread-on-functional-disorders-in-denmark.13820/

 

Yep I saw that. And despaired.

If ever there was a definition of cart before the horse this would be it.

Endocrinologists should be completely up in arms about this. It's a massive empire building exercise.

 

Taking the survey does not fill with confidence. I don't think anything of value with come of this, it's just busywork for the conversion disorder ideology, whose only function is to create more work for the conversion disorder ideology. The circle jerk must circle along.

My feeling is that this project will be cancelled for being a pointless waste of time because of COVID-19, as the symptoms they are listing are precisely some of the most common COVID-19 symptoms. I explicitly made that point in my comments.

Way past time to cancel this ridiculous belief system. It is strictly and only about physician wants, nothing about patient needs.

 

I agree that they should be up in arms - but endocrinologists have been dismissing patient symptoms for decades. The idea that the thyroid isn't really underactive until the TSH is > 10 is totally sadistic. But healthy people with healthy thyroids have a TSH, on average, of about 1.2

I personally can't see how doctors can even diagnose Central Hypothyroidism any more with current guidelines. But then they always claim it is really rare anyway so they don't need to test for it, so they just seem to accept those patients as collateral damage when it comes to the desire to save lots of money. After all, it allegedly takes 12 years for someone to die if they have massively insufficient thyroid hormones, so they've got tons of time. (That last sentence was sarcasm by the way.)

 

To be fair - not all of them. I have had 2 really good ones. They explained to me the issues with the "normal" range. A third realizing I had a diagnosis of ME suggested a trial of T3 to see if that made any difference (in my case it made it worse).

The snag is many of them are working under limitations and dictats coming down from above. Many of them are left banging their heads in frustration when GPs don't cooperate with the testing and dosing the consultant thinks appropriate. In my case, I noticed many of these really good endos were older ones with enough seniority to buck the traces where they could.

The younger ones tend to follow the rules or risk hindering their own careers.

My experience of endos has been generally very good when not being hamstrung by the bean counters. Of course there always exceptions.