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

In scope, theysay:

Fatigue is in scope but Chronic Fatigue Syndrome is out of scope as there is another PSP which is addressing this.
Click to expand...

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

The scope of the MNYES PSP is defined as:

  • Aetiology, diagnosis and treatment/care of patients with MNYES in the UK and Netherlands, as well as organisation of services, social consequences and long term outcomes including cost implications for patients.
  • International exchange and exploration.
  • Confirmed topics include (but are not limited to): pain, fatigue, dizziness, functional neurological disorder, bowel symptoms, palpitations and syncope.
  • Ages 16 and older are included.
Click to expand...
 
Arnie Pye said:
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.
Click to expand...
It's hopefully not as bad as that for ME. We've had a vote recently to appoint @MEMarge to the ME PSP steering group.

The MNYES PSP being discussed here seems like a stitch up by psychs.
 
Esther12 said:
Are two of the five patient representative related too? I wonder how they were selected.

This looks terrible. It could be worth asking the James Lind Alliance about this?
Click to expand...

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.
 
From what I understand anyone with an interest in establishing priorities for research into a condition can ask the James Lind Alliance to provide a facilitator to take them through the set process they have developed that leads to consulation of patients, carers and health professionals on their priorities for research. The JLA role and other costs could be provided by a government or charity funding body.

The CMRC initiated the process for ME, with a presentation at their conference this year. S4ME was invited to be represented on the steering group, and we appointed MEMarge as our representative with the hope of being able to influence it to be well run and provide sensible outcomes.

I have no idea who initiated the one described on this thread. It sounds pretty dodgy to me. It would be worth asking

Who initiated it
Who is funding it
Who chose the members of the steering group
Which organisations are excluded from participation and why
Which patient groups will be invited to participate
 
The protocol includes the following:
The scope of the MNYES PSP is defined as:

  • Aetiology, diagnosis and treatment/care of patients with MNYES in the UK and Netherlands, as well as organisation of services, social consequences and long term outcomes including cost implications for patients.
  • International exchange and exploration.
  • Confirmed topics include (but are not limited to): pain, fatigue, dizziness, functional neurological disorder, bowel symptoms, palpitations and syncope.
  • Ages 16 and older are included.
Fatigue is in scope but Chronic Fatigue Syndrome is out of scope as there is another PSP which is addressing this.
The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.
Click to expand...
 
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.
 
Confirmed topics include (but are not limited to): pain, fatigue, dizziness, functional neurological disorder, bowel symptoms, palpitations and syncope.
Click to expand...

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.
 
wdb said:
I like that they are calling them 'medically not yet explained' but I'm not convinced they are being sincere or they would have written where the cause has not yet been explained by medical investigations or tests.

And given the number of psychiatrists/psychologists/physiotherapists involved I don't expect any of this research will be looking to identify any medical explanations.
Click to expand...
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.
 
Invisible Woman said:
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.
Click to expand...

@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/
 
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.
 
Invisible Woman said:
Endocrinologists should be completely up in arms about this. It's a massive empire building exercise.
Click to expand...

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.)
 
Arnie Pye said:
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
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom