Medscape: If It Feels Like Fibromyalgia? 'It Probably Is' - Fibro article linked to from MEA facebook

The article is: If It Feels Like Fibromyalgia? 'It Probably Is' (medscape.co.uk)

The MEA facebook post is: ME Association - What are doctors being told about fibromyalgia?... | Facebook

What are doctors being told about fibromyalgia?
There are a lot of symptom overlaps between ME/CFS and fibromyalgia and some people with ME/CFS have a fibromyalgic component to their illness
One major difference is the emphasis on increasing movement and exercise in fibromyalgia - as this conference report indicates
Dr https://www.medscape.co.uk/.../think-your-patient-has...

 

I have a few questions

the first is that this post suggestions the major difference in what doctors are being told is an emphasis on increasing movement

What do people think of this?

I know some people with fibro who said a difference is they need to do some gentle movement (which is different - and this article seems to have a section where physio are keen to look at things like gait and where people might be holding themselves wrongly etc)

 

the second question is the following section from the article, particularly the middle paragraph. Where it says don't do all the tests for rheumatoid factor etc 'because they can give false positives or negatives......'

What are people's thought on this? Is that strange advice?

"Expect Normal Test Results
The diagnosis is really all down to the clinical history. There is probably no point in counting the number of painful or tender joints during a clinical examination, Ellis and Easton both said, as people with fibromyalgia are likely to hurt everywhere.

Alongside the RCP tool, tests that could be considered are routine bloodwork, such as a full blood count, urea and electrolytes, liver function tests, and creatinine kinase. But leave the antibody tests – rheumatoid factor, antinuclear antibody, antineutrophil cytoplasmatic antibody, and immunoglobulins – alone, they both advised. These can give false positives or negatives and aren’t particularly useful in helping to make the diagnosis and can delay people getting the care they need.

And keep in mind that any test that is done is likely to be within the normal range, Easton said. “Set that expectation” with the individual, he advised, because it “puts you in a position of strength and trust”."

 

This is a complete garbage article typical of what comes out of the Primary Care Medicine camp. Apparently it is supported by Versus Arthritis and Royal College of Physicians which is an indication of just how much standards have slipped in forty years.

These people are just making things up according to their BPS beliefs and their desire to see themselves as great saviours of poor people with imaginary illnesses (which of course they would not say are imaginary).

Total trash.

Blood tests can give false positives but the reason why GPs do not need to use them is that anyone who needs these blood tests needs to be seen by a physician with adequate training rheumatic diseases, not a Jack of all trades GP who doesn't know how to elicit the specific symptoms of inflammatory disease.

 

I guess the question is why Charles Shepherd and the MEA are putting out messages linking to rubbish like this.

I find it all rather puzzling. More than anything it is just the lack of discernment.

 

Quote from the article:

"Ellis noted that the goal is to diagnose and treat people within primary care, without referring to a rheumatologist. This is not because rheumatologists don’t want to see these patients – they may be happy to – but the goal on a national level is for people to be diagnosed and managed within primary care."​

 

Yes, the goal is for GPs to take over the world and provide a really crap service on their own.
Sadly the likely incoming government in the UK is all for that approach too.
What happened to high quality care?

 

Yea so poorer/less informed people can settle for poorer treatment ---- "All animals are equal, but some animals are more equal than others." (Orwell)
But yes, why are our "champions" parroting this on behalf of the establishment? Reminds me of past times where one organisation was secretariat to the (Westminster Parliament) APPGME and supporting the PACE trial - CBT & GET - evidence they work with for some people!

Reminds me that my wife highlighted this -
"UK’s biggest GP chain replacing doctors with less qualified staff
"A GP working at the practice said they were short of eight doctors. The practice manager said they hired less qualified medical staff called physician associates (PAs), because they were "cheaper" than GPs." [https://www.bbc.co.uk/news/health-61759643]
Reminds me of the 4 Yorkshiremen Sketch* - in the future saying you were diagnosed by your GP may be viewed as "the good old days" -

https://www.youtube.com/watch?v=VKHFZBUTA4k

 

And is there a way to bring sense to the world?
I wonder sometimes.

 

Yea - I think part of it is understanding e.g. you've pointed out that when you visit a rural clinic in Switzerland, they have Doctors who work within a hospital setting who can diagnose and treat patients with run of the mill thigs - referral to other hospitals as needed. My point is that you describe another option - however poorly I re-iterate that model.
One of the other issues is resistance from "stakeholders"/vested interests in this case GPs and their representatives. So you'd need awareness of a possible alterative (public support for change) and political willingness to move to another system in the face of opposition from stakeholders.
Look at housing - there are models which deliver affordable rental housing e.g. Vienna but actually getting to the point where there is a political will to adopt that strategy ----
To some extent we (electorate) need to enable politicians --- Radio 4 recently (2024?) broadcast a program re climate change and part of the "solution" was for the public to enable/allow politicians to make the necessary changes.
But yes - the system(s) often fails to address issues like health, housing ----

 

Cost saving dereliction of duty.

 

Hasn't it been shown that surveys of, well actually all specialists, show that actually they don't? Most reject referrals for this, this is something that would be easily knowable, if there was motivation to organize that information. Which there isn't. Because it's embarrassing, and not knowing helps cover it up. Funny how that works. But there are surveys of MDs. What is the point of people doing those surveys if their findings simply never get used?

That was actually something kinda funny/tragic, maybe I'm remembering wrong but there was a survey of neurologists about FND and most didn't even want to see any of those patients, because they understand what all the dog whistles mean and don't take it seriously. And it was done by some of the big FND promoters who concluded, as usual, that they need to tune their patient dog whistles better, as if it changes anything for MDs who know that it all means, uh, who even knows at this point.

Anyway, this is comically wrong. Of course they don't, because of decades of BS pseudoscience there's hardly anything they know to do anyway, even though there are probably things that could help, but it's all washed up in a sea of pseudoscience obsessing over the magical effects of exercise. Somehow just recreational exercise, oddly enough, in people who are doing generally well. And similar to other recreational things, including sedentary activities, in people who are generally well. Funny how that works, people enjoy to do things they enjoy if they can enjoy them, and if they can't, because they're ill, but you don't believe it, then figure out how to get them to say it anyway, even if it's false, especially if it's false.

 

That may well be so but it depends on the pre-assumption of 'FND' or 'fibromyalgia', which are much the same diagnosis in this context.

When I was a rheumatologist I was happy to see anyone who had pain or similar symptoms. I saw it as my duty to try to analyse and provide advice on any condition anyone might have. If I could not explain pain, which might lead others to diagnose fibromyalgia, although there were precious few people who had free-floating unexplained pain, most had pains that one could make some sense of, then I would do my best to present that to the person with the pain in a sympathetic and helpful way.

But it may well be that colleagues who could not immediately find a label and follow a guideline that specified a pill or a therapy found it challenging.

Part of the problem is when people come along with a fixed idea of their diagnosis, which may be something totally imaginary like mast cell activation syndrome and get annoyed when that is not validated. The fault lies with the quacks who sell these labels.

 

I thought I would confirm whether the whole thing was utter bad advice first before I commented as I'm no expert, and I couldn't tell whether there was intended to be some 'unwritten hint' in it being 'this is what doctors are being taught about something else some of you might have'.

Yes. It seems to be a conscious change, and I thought it interesting that it is one that Charles is now following, for them to post links to these sorts of things now without offering their warnings or verdict in the post even when it is something like the LP

At first I didn't know whether it was a social media strategy to 'get debate and discussion' by making it 'open' or whether there was something to do with charity policy not allowing them (but surely with the LP not being in the guidelines and having ASA verdicts against them) to be 'not friendly' to others within the area.

Now I have no clue what they are doing.

It seems to have changed emphasis, if you were looking at it as a professional mission-statement, from being a vehicle of two-way and one-way communication with the constituency of actual pwme

and also clear communication to those who go to those channels who don't have ME, but could affect their lives, as to what the correct information and perspective is on all these things. IN order to protect pwme, and at least stop gaslighting by those who are non-BPS enough to bother going to look and read the information elsewhere on sources like MEA. And that might include professionals eg HCPs those in care, schools or responsible for funding choices all over the map.

To almost perhaps using more generic principles of 'traffic' and 'interaction' focused aims - which believe it or not is quite a different thing. Imagine eg the principle of click-bait. Not very good for the person on the receiving end of it, but gets the stats up seemingly. Lots of variables play into the long-term usefulness of that as a strategy because people get fed up of it/being used for topics where they have to ask the actual question eg of why something has been posted.

OR there is the eventual conclusion that something has significantly changed within or influenced either by coercion or 'persuasion' those who we do know from the MEA to 'get in line' with what seems a massive change in perspective.

 

To me it struck me as a groundhog day repeat of the utter push to 'not investigate' that was secretly happenning with those who got dumped into CFS a decade ago.

Anything that is suggesting people should be misdiagnosed - which this advice would seem to be doing to me by saying that testing for anything or referring shouldn't happen - well... it should be shocking. Except for this demographic they've got away with it for so long it doesn't shock.

And the thing is that should someone insist on being referred then this sort of political propaganda directly leads to the snidey content of notes about those individuals - again normally based merely on 'don't like their face' (maybe demographics?) - to attempt to ensure that said appointment is not just a waste but is influenced that person isn't worth taking seriously either. Even a referral to somewhere paid for privately they come in as gatekeepers and get to write said letters patient's can't see. And if GP's disagree with what comes back from that I think there is a belief that can then be ignored anyway, letter hidden away, nothing added to main history etc.

In this instance, I'm intrigued that it might be coming from people selling something outright. Rather than the pretend benevolence to the 'workload of GPs or hospital depts'. But it is the same message of hinting and painting pictures of certain people as 'the cause of your job being hard, and money being tight for others, all the ills of the world' and to treat them as a pest who don't deserve the same rights others are due - but with a nice pretend benevolence cover-up phrase to lie to themselves they aren't shepherding said people not only of ever being able to access any health service for anything but also to be psychologically, physically and financially harmed by insinuations that are based on nothing other than the problem personality of those behind it by labelling them whilst 'not having to do it properly so they don't have any of the safeguards that the law would require go with that'.

 

I note that the GP stuff gets targeted in the UK, particularly more so in recent decades, because they are independent from NHS (but not from the colleges) and gatekeep (both patients and funding to hospital depts and tests) and if influenced can then influence funds to almost everything directly and indirectly. It is very different to the set-up and result you would see from eg the market-driven situation of USA, or even a health system where there was a different central point for diagnostics and collecting information on what people actually have and then planning from there.

It would be a fascinating one for someone to put/explain better but it is a really weird and vulnerable to influence and conflict of interest model when you think about the vast power within that if someone influences it.

- GPs in the UK aren't employees of the NHS (but instead their GP surgery) and each GP surgery is a business in its own right (so x number of the GPs there are partners taking dividends instead and having 'other roles' related to the business) with those in charge of funding instead using 'nudges' like incentives such as certain things 'costing money' and others 'being part of the KPIs by which you earn money' (like x% of those with asthma having a review once a year, x% of those you deem as 'depressed' being given a card for IAPT was one in the past).

Apparently being a partner is a massive job re: hours, which means even those who perhaps have all the best of intentions are spread so thin they are very vulnerable to not having the mindspace to criticically think on or question when edicts from those who've gone into positions suggesting these things to them are put out there, sold with 'will solve x problem for you'.

One of the main jobs of these businesses is managing the costs of peoples healthcare and prescriptions, and delivery of things like vaccines they might get paid a contract etc. The local boards which used to be CCGs would have GPs on them deciding where funds were spent apparently 'based on demand/need' but tail wags dog there (you can't send a 1000 people needing rheumatology to a closed list so they all went to physio that then 'seems to have the demand')

Lots of GP surgeries (which group together often and commercial groups have come in to take over many of these) now have in recent years added the following, which I assumed are funded initiatives (but I assume will be based on targets so said staff aren't sitting around): their own on-site physios, psych-related staff, pharmacist, maybe OT, maybe wellness 'coaches' type staff etc.

Local boards can also decline referrals or requests for scans, and 'lists' can be closed which leads to tail-wags-dog diagnoses based on what they can test or where they can refer to. Instead of 'you probably have a head injury but I'm sending you to IAPT (for CBT.. because they’ve got loads of space and if I refer you for a head scan or appt in a hospital dept it will be declined as the list is closed due to not enough supply vs demand)' you can imagine what might happen.

The circle gets squared in the diagnostic description. People are sending you somewhere rather than nowhere ‘to help’ and the better that salesperson can be with a spiel to heal that cognitive dissonance cfs professional instincts then it sorts tgat short term problem- whilst making it ten times worse long term by shifting funding and perceived demand for different specialties more permanently. So instant of urgent need for more scanners and supply of people who deal with head injuries so appointments are available and in good time, it goes down as IAPt demand really high in next funding round.

But also the GPs have literal pathways on their computer screen that they have to click through and follow. Which is what I assume is behind the ulcer ridiculousness (you have barn door ulcer symptoms, but we have to follow this so: go away for 2weeks and see if it gets better, then another 2 weeks whilst being told you are stressed and so on).

 

What diagnosis do you propose we give to these patients who are presenting with idiopathic allergies?

 

Allergy. The term has been around for decades.
'MCAS' is supposed to be activation of mast cells that is NOT an allergy as normally understood.

 

But then doctors will say it's not IgE so it's not a real allergy which leaves patients without a diagnosis. I'm not saying that I know that MCAS is correct, but it seems there's a diagnostic void here.