The Times 22nd April 2025: ME sufferers ‘feel invisible and ignored’ amid lottery of NHS care

[Oliver3]

Who’s freeman?

I’ve already explained why they are unanswerable. And I’ve spoken to the ombudsman and my MP about the situation who both acknowledged it. I wasn’t asking your opinion, just providing my experience.

Yeah..I'm allowed to respond to your ' experience '

 

[Treeman]

Just because it hasn't improved your life doesn't mean it's an inherently bad system.

When and where did I say that?

You're conflating different issues

?

I think your conflating that with the nhs

?

Once long covid and by proxy m.e. become more established in the cultural mind, then the nhs will invest.

We’ve just experienced the most disastrous health situation in 100 years and the government’s response is to provide approximately £9 per person for the 2 million with long Covid for all medical care, that won’t cover the cost of one appointment. Do you think that’s an appropriate level of funding when the cost to the UK economy runs in to billions annually?

The NHS decides where it spends its funding not the government and it’s not on chronic fatigue research and support.

The government admits people with rare diseases HAVE suffered with health inequalities from the nhs. They are at present drafting a delivery plan for ME CFS. They’ve also said there is going to be NO funding for it.

The nhs has been providing me health inequalities for decades and a recent report on the BBC informs, Here “NHS staff poses a significant risk to patients” and “The Health Services Safety Investigations Body said medication errors, impaired decision-making, reduced attention and rude and disrespectful behaviour were the most common problems”

 

[Treeman]

Give over with the massive aggression.
You've been called out on your whinging .

Attacking me (and I’m not the first you’ve done it to on this thread) is inappropriate, why can’t you debate it without getting personal? You don’t appear to have the skills or politeness.

you’ve got rose tinted glasses on when it comes to the nhs which conflicts with the majority of the uk population.

Here in this report it says that less than a quarter of people in the uk are satisfied with the nhs. You’re in a minority.

your assertion that the nhs is unanswerable is a complete lie.

Not true, ask the ombudsman if they are investigating all complaints about the nhs.

 

[Treeman]

The NHS is broken: Health and Social Care Secretary statement​

Statement from Wes Streeting, Secretary of State for Health and Social Care, setting out his mission for saving the NHS.

From today, the policy of this department is that the NHS is broken.

That is the experience of patients who are not receiving the care they deserve, and of the staff working in the NHS who can see that - despite giving their best - this is not good enough.


Here

 

[ruben]

I’m in the uk and wanted to say that the nhs is far from perfect for anyone suffering with a rare disease like, ME CFS. It informs that people with rare diseases suffer “health inequalities “. If you have a common ailment you could do well.

The uk government has recognised this and set out the UK Rare Disease Framework Here

Some of its aims are;

The UK Rare Diseases Framework (UKRDF) outlines 4 high-level priorities for rare diseases in the UK over the next 5 years:

• helping patients get a final diagnosis faster
• increasing awareness of rare diseases among healthcare professionals
• better coordination of care
• improving access to specialist care, treatments and drugs

The outcome of these priorities are to improve the health and well-being of the patients.

My own story is that I’ve been ill 54 years and was only diagnosed about 7 years ago. In that time nothing the nhs has done has improved my life in the slightest, I’ve recently made complaints to the nhs saying they have failed me considering the above UKRDF.

I found that a couple of ADHD medications gave me more energy but they refused to give it to me.

In response to my complaint I expect that they will deny any wrong doing and I will have to take it further to the ombudsman. However, I’m also aware that they have been overrun, had staffing numbers reduced and are only dealing with complaints where people have died, such is the state of the overall service at this time.

This means the nhs is now unanswerable to anyone and can do what they want unless they kill someone due to poor performance.

I have to concede that no one on the planet at this time knows what exactly causes ME CFS or has a treatment to push it in to remission or to cure it, the best place I’ve ever found is this forum but it also makes me frustrated that the nhs has a £1 billion annual budget for research and none of that public money is spent in resolving ME CFS.

Treeman

Well we have something in common as I got ill in summer 1972, after glandular fever, so we've had this condition pretty much the same length of time. But you can't surely call ME/CFS a rare disease if there's a six figure number of us with this condition in the UK.

 

[Treeman]

Well we have something in common as I got ill in summer 1972, after glandular fever, so we've had this condition pretty much the same length of time. But you can't surely call ME/CFS a rare disease if there's a six figure number of us with this condition in the UK.

I was informed that if less than 4% of the population has an illness then it’s rare.

There’s probably some further different explainers and the recent research saying there could be more in the uk undiagnosed with ME CFS would further muddy the waters.

I have discovered I have a genetic mutation which causes low immunoglobulins which only has about 0.000005% of the global population with it. I did the maths once and if I remember correctly it was around 16000, and that’s considered ultra ultra rare.

First ill in 71!

Edit, it says the following

Here

Rare diseases affect about 4% of the population during their lifetime with estimates ranging from 3.5% to 5.9%
Here I found this on the Rare Disease Day website.

The story of Lori​

What About M.E.?

Living with a Little Known and Widely Misunderstood Neurological Disease
Myalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been diagnosed with and that has changed my life forever.

 

[Rufous McKinney]

WHY DO random members of the public know about ME/CFS
AND MY DOCTOR DID NOT ?????
Seriously,
what
IS
up with that?????????????????????

such a great question we can't seem to answer.

Given the lack of treatment and the mystery of diagnosis, could it be doctors are programed to PRETEND they never heard of it?

I"m also noticing that doctors do seem to know about it if their jobs are NOT directly involved. My oncologist/hematologist knew about ME.

I even made her feel a bit guilty and she ordered up a bunch of tests that, of course, the rheumatologist found not to be of interest.

My GP knew about Stanford and ME. He did not know about doctors losing their licenses over vaccine exemptions. You wonder how doctor stay informed.

 

[Rufous McKinney]

The government admits people with rare diseases HAVE suffered with health inequalities from the nhs

ME is not a rare disease, I thought I'd throw that into the hopper.

 

[Rufous McKinney]

I was informed that if less than 4% of the population has an illness then it’s rare.

I was not sure who labels it that. You may be correct. I think of things like Lorenzo's oil, being a rare disease.

Also, we have a related mass disabling event called COVID-19. Lowering the rarity, considerably.

 

[BrightCandle]

From a medical point of view diseases are considered rare if they have an incidence of less than 1 in 1000. ME/CFS is not a rare disease.

Diagnosis of ME/CFS in the NHS is exceptionally rare. Most of the GP clinics have never diagnosed a patient and most have very small numbers diagnosed likely from private GPs who those patients paid. Most ME patients have no local ME service that isn't exercise and CBT even now. The NHS has been attrocious on ME/CFS, the closing of Long Covid clinics despite 30% of their own staff reporting Long Covid says it all about their attitude to the disease.

Chris Pointings very recent paper on prevalence come out to a lowball of at least 0.6% of the population have ME/CFS, but just 0.16% have a diagnosis. That is disgraceful for a disease that has an official diagnostic criteria and guidelines and has done for decades. Worse in all this is data from the US suggests its more like 1% pre Covid and could be more like 5% due to Covid induced ME/CFS, and Chris Pointings data is recent digital records.

The last I could check the amount of people referred to Long Covid clinics was about 70,000 people and the rate had been declining, they stopped counting last year. About the same time last year they stopped that count the UK GP Patient survey came back that 3.2 million people knew they had Long Covid by the name. Which means the real number given the lack of awareness is much higher. In that environment the NHS has diagnosed almost none of them, has referred a rounding error of them to the clinics and then 9 months later closed most of the clinics down.

On Long Covid and ME/CFS the NHS is actively harmful and its behaviour is a disgrace and take any doctor and 95% chance is they will gaslight you instead of recognise your condition and act appropriately. Some of the vitriol written back to the private GPs that do the diagnosis like William Weir and Claire Taylor by patients NHS GPs is appalling and they ought to hauled up into front of the GMC for malpractice. But so far not a single doctor has been struck off for mistreatment or killing an ME patient, at least 2 have been struck off for treating ME patients however.

 

[Oliver3]

Attacking me (and I’m not the first you’ve done it to on this thread) is inappropriate, why can’t you debate it without getting personal? You don’t appear to have the skills or politeness.

you’ve got rose tinted glasses on when it comes to the nhs which conflicts with the majority of the uk population.

Here in this report it says that less than a quarter of people in the uk are satisfied with the nhs. You’re in a minority.



Not true, ask the ombudsman if they are investigating all complaints about the nhs.

I'm saying to you...what is the alternative? Do you know what was here before the NHS. Do you want that to come back.
People have got very blasé and complacent forgetting the terrible black hole it would leave.

Show me a poll where anything in public isn't criticised. Uts the nature of the beast.

What I'm repeatedly trying to say to you is talking down the NHS is dangerous. There are so many people wanting to destroy it.

Are you forgetting what health care was like in the 80s. Huge waiting times.
Its got so much better. And it saves many lives of people who could never afford that care.


Remember that and ve careful with your criticisms.

We're all frustrated with the lack of change. It's not the nhs at fault. It's societies failings.

Don't forget we've also had around 7 million extra people move here In the last ten years. The fact the NHS copes is amazing.


No I wasn't rude. I was vociferously protesting an outside voice with no understanding saying that m.e. care showed how bad the NHS is. That's a false correlation and a cheap shot that should be called out.

I've repeatedly said it needs improving. The fact you can't see any good in it is laughable abd I'd love to know what system you'd think would work better.
It certainly isn't americss Darwinian system.

It's OK to be unhappy and want change.
It's not OK to make false equivocations, or talk down a whole system cos it shucks ( like everywhere else in the world, at m.e).
That's myopic individualism . See what good It's done for our society please

 

[Oliver3]

From a medical point of view diseases are considered rare if they have an incidence of less than 1 in 1000. ME/CFS is not a rare disease.

Diagnosis of ME/CFS in the NHS is exceptionally rare. Most of the GP clinics have never diagnosed a patient and most have very small numbers diagnosed likely from private GPs who those patients paid. Most ME patients have no local ME service that isn't exercise and CBT even now. The NHS has been attrocious on ME/CFS, the closing of Long Covid clinics despite 30% of their own staff reporting Long Covid says it all about their attitude to the disease.

Chris Pointings very recent paper on prevalence come out to a lowball of at least 0.6% of the population have ME/CFS, but just 0.16% have a diagnosis. That is disgraceful for a disease that has an official diagnostic criteria and guidelines and has done for decades. Worse in all this is data from the US suggests its more like 1% pre Covid and could be more like 5% due to Covid induced ME/CFS, and Chris Pointings data is recent digital records.

The last I could check the amount of people referred to Long Covid clinics was about 70,000 people and the rate had been declining, they stopped counting last year. About the same time last year they stopped that count the UK GP Patient survey came back that 3.2 million people knew they had Long Covid by the name. Which means the real number given the lack of awareness is much higher. In that environment the NHS has diagnosed almost none of them, has referred a rounding error of them to the clinics and then 9 months later closed most of the clinics down.

On Long Covid and ME/CFS the NHS is actively harmful and its behaviour is a disgrace and take any doctor and 95% chance is they will gaslight you instead of recognise your condition and act appropriately. Some of the vitriol written back to the private GPs that do the diagnosis like William Weir and Claire Taylor by patients NHS GPs is appalling and they ought to hauled up into front of the GMC for malpractice. But so far not a single doctor has been struck off for mistreatment or killing an ME patient, at least 2 have been struck off for treating ME patients however.

I agree withall that.
Would you want to be without the nhs tho?
I bet you wouldn't.

Before covid, no one anywhere thought m.e. was real.
I've gone through all the same crap we all have for decades and it's not contingent on whether it's nhs medicine or not.
It's what we accept as a society.
There's so many ways society affects institutions.
I believe long covid will not be ignored and it will improve.
My original gripe here is taking cheap shots at a system with a genuinely beautiful idea, by people who don't understand it.
Criticise, agitate etc etc.
But don't whinge and talk down the whole red system. So many people are trying to destroy it. Most of them rich lunatics.
If you gave the nhs to any third world country, they wouldn't tbe able to believe their luck!!! It's an amazing system.
Like I've said, it's saved so many people in my family over the years. Are we just going to gloss over all that good?
As I've said before. Which countries are providing good long covid cate.
If enough people talk the NHS down and allow someone like garage to get in , where he pulls the plug on the whole system, boy are you gonna know about it!!

 

[Oliver3]

Yeah it's not an nhs problem. It's a human problem of recognising m.e. as a real illness. It's rooted in masculinity, superiority and lack of empathy. That happens all across the globe and it's not a direct cause of our treatments at the hands of the nhs.
I've bee n through it all. Just like everyone here. The gaslightih etc. I've realised it's a societal , human empathy issue.
It will come, just like george Floyd's killing createdjust like so many movements for better understanding of humans. Unfortunately thats how humans work. don't shoot ourselves in the foot by talking out of existence the one decent thing about this country. There's so much goodwill within the system and so much easy pot shooting to be had uts embarrassing

 

[Treeman]

It's not OK to make false equivocations, or talk down a whole system cos it shucks

I’m not going to answer your whole comments because you’re in denial.

The UK government has said the nhs is broken, the health watchdog says it’s putting people’s life’s at risk, I could go on and give more new examples but with some it’s wasted.

The way things improve is to first admit there’s a problem that extends right across the nhs, You appear to not to be able to do this.

In December 2024, there were 106,432 vacancies available in the nhs. Is that because it’s a great employer? Or a terrible job to have.

The nhs has been abusing me for decades and there is no sign of that changing anytime soon. I’m not hitting the streets banging pans at 8 o’clock every Thursday evening to celebrate that.

 

[Oliver3]

You're a professional victim. It's not about the nhs.
It's a cultural issue far deeper.
Yeah I'm decades deep. So what? There's no denial here.
As I keep explaining. Show me one health care system that deals with m.e. correctly.

This is about allopathic medicines denial across the west of our illness. And society at general.
Not the nhs as a concept.

It's you whose in denial about the great work done, just focusing on your self.
Like I said, every member of my family has had their lived saved by the NHS. You just gonna ignore that and whinge?
You have to take it as a whole system.

Of course I want better treatments for us and all the other diseases ignored by researchers and pharmaceuticals ( most often private ebdevours)

You'll notice at the moment, the problem with our private water systems, rail system our post system etc all privatised. Not delivering

Subconsciously , you know, if you break your leg etc tomorrow, you're covered. Unlike the United States where you have to worry about finances.

I suggest uou meditate on the NHS in the round.

Btw I never clapped for the NHS or got vaccinated. Perfect example of how governments meddle in our health care.

I've said my piece. Stop feeling sorry for yourself on this point. Its not the nhs fault were sick.
It could be the agricultural systems use of pesticides. I hope you have more ire for them too.
In the long run, the nhs will deliver for us, abc when it does, you win be glad it's free for you

 

[Oliver3]

As I've repeatedly said . Which perfect health system are you comparing the nhs against. Get. Grip man

 

[Treeman]

You're a professional victim

Another personal attack, you really are an unpleasant individual who makes wild base less acquisitions.

Go and troll someone else I’ve washed me hands of you.

 

[Oliver3]

I don't care...you're attacking the only good thing our country has left. Sounds like you're done with everything.
You are one of those guys who just moans about everything tho

 

[Mary]

THIS THREAD IS CLOSED FOR MODERATION