To be shocked that over half a million people under the age of 35 are out of work due to long-term sickness

[puncheur]

I had no idea. These numbers are extraordinary. 560k people between the ages of 16 and 34 economically inactive due to long term illness.
https://www.theguardian.com/society/2023/dec/24/500000-under-35s-out-of-work-long-term-illness-uk?CMP=Share_iOSApp_Other

It's very sad for all the genuine ones but not all are genuine.

My neighbour is 33. Had a job but decided he didn't like having to get up to go to work every day so left it.

When he could he applied for job seekers and then when they pushed him to find work he went to his GP and said he was suffering anxiety and could not leave the house.

He has now been getting benefits for coming up to a year because he supposedly can't work as he can't leave the house. Apart from the obvious fact that he could look for a work at home job, he does actually work cash in hand out of his house 4 or 5 days a week! So getting wages and benefits.

It's 4℅ of that age group. Of that number a significant amount will never work because they have ongoing serious health and development issues.

The rest may work at sometime in the future or work again. A friend was out of work for over 25yrs with serious MH issues. He's now back in work full time with successful treatment.

My son at 21 has care needs and is autistic. He's in the number of those out of work but has future work potential.

My friend's son has profound learning and physical disabilities. He will never work.

I'm not sure I can explain per se but I can tell her story.

She started getting ill when she was 13. She had a period of tiredness and pain. It seemed to go away after a bit so we left it.

Then when she was coming up to GCSEs she started experiencing joint pain. We spoke to the GP who said it was probably arthritis and got an NHS referral to (I think) a rheumatologist. He said it was also probably arthritis and started her on painkillers.

They didn't seem to make a difference, and she was increasingly tired and in pain. She struggled to get to sleep and we replaced her bed with an expensive one and redid her bedroom.

Then she had severe stomach pain and we took her to A and E and they said it was the painkillers and so she stopped taking them.

We saw the consultant again who said it wasn't arthritis as if it was it would have responded to the drugs and that he didn't know what it was.

She started A levels but the pain and fatigue continued to get worse. We saw a pain consultant privately and he diagnosed her with fibromyalgia and prescribed SSRIs and painkillers.

Eventually it got so bad she dropped out of school.

The private medical insurance agreed to pay for a second opinion and we took her to an expensive London consultant and told him to run every test he could think of because the insurance would pay for it.

37 page report, three things out of normal range.

The NHS referred her to the me/CFS service as she was now NEET (not in education employment or training) and part of that referral was checking thyroid which again came back out of range.

GP wouldn't do NHS referral to get it treated so we saw a private endocrinologist who started her on thyroxine.

It took a year to titrate to the right dose (at appointments every 2 weeks to start with).

Once on the thyroxine her pain and fatigue started to go. She had been pretty much bedbound for the whole day, so there was a long way to go to get back to normal.

After a couple of years of thyroxine she was well enough to do a part time college course, and then an access to uni and she is now at uni studying physics (she is very bright).

The pain and fatigue have lessened over the years but they are very much still there. She can't walk far and she struggles to concentrate for more than a few hours each day,

I've been disabled since birth with 3 conditions - didn't get diagnosed until 21, 25 and 26. I've developed more conditions since. I work full time and receive PIP (lower rate mobility).

I don't think either the social model or medical model of disability is fully accurate.

My main disability is Epidermolysis Bullosa which is a genetic skin condition. My skin is fragile and tears and blisters easily, especially on my feet. Now, there are social aspects to this, the more people recognise the difficulties I have walking, the better. The more my reasonable adjustments at work are respected, the better. The more access I have to lifts and public transport (I'm medically unfit to drive), the better.

However, the fact is that I have a faulty gene and my skin does not function as it should. There's only so much society set up can compensate for that. My DH can shower and leave the house 10 minutes later. I can't. When I shower, I have to carefully dry myself to leave my skin intact. I then have to moisturise my feet. I then have to wait 30-60 mins before I can apply the dressings which enable me to walk enough to leave the house. For me, a mix of the social and medical model explains my disability.

Medically speaking, it also doesn't help that people have to wait ages for treatment now. In 2010 I was referred to Rheumatology and seen less than 8 weeks later. A relative was recently referred to Rheumatology with a wait of more than 8 months. Delays to accessing a specialist can cause a disability to worsen, particularly for conditions like rheumatoid arthritis which have the best outcome when patients are diagnosed and start treatment within 3 months of onset. The 8 month wait for my relative to be seen means that 3 month window is long gone.

I suspect long Covid and conditions triggered by Covid will be having an impact too. A colleague in her early 30s caught Covid in 2020 and hasn't been able to work full time since. She was previously very fit and well. She's in no way the only young ish (under 40) person I know who has been floored by Covid.

@Octavia64 Gosh, what a nightmare for you both. Hypothroidism is rare in young people, so presumably that's why the GP didn't consider it.
I hope things continue to improve for her

Roughly there's 37.5 Million people that are working age in the UK.

560k is a big number for sure, but in the overall bigger picture of the population and those of working age
560k is barely 1.5% of working age and less than 1% of overall population.

Now if it was nearer to 15% I'd be concerned.

@Octavia64 I have a very similar story regarding Hashis. Being untreated (and not taken seriously) for over a decade has led to irreversible chronic illness and disability. Had symptoms since my teens but not textbook symptoms so wasn't tested until a lot later in life. The damage was done.

Gp's can't diagnose autism.

It involves a very thorough assessment over months by a multi disciplinary team of wide ranging professionals.

And the waiting list to get this is years long.

Either your relative is a wonderful actor worthy of an Oscar or the more obvious explanation is that they actually do meet the diagnostic criteria.

It’s 4% of what should be the healthiest cohort though, that’s the concerning aspect.

I think the people interviewed by the Guardian give a good insight into some of the issues.

Employers and their lack of understanding and flexibility when it comes to people with long term health conditions is a one of the biggest problems.

I had endometriosis/adenomyosis which caused me chronic pain & such heavy bleeding that I could not even leave the house (I ended up having a hysterectomy). Some employers made my life hell when I was really struggling with my the conditions and I ended having to leave two jobs because of it.

Same thing with my mental health issues (I am autistic and have a long history of depression). Instead of being supporting I have had employers who made my conditions worse because of their lack of understanding and unwillingness to put in place reasonable adjustments and they added stress that could have been avoided on top of my existing issues.

I had a severe breakdown a few months ago and was under the care of the crisis team because I was suicidal. When I felt well enough to go back to work my GP gave me a fit note suggesting reasonable adjustment. On my first day back my manager pressured me to ignored the GP's recommendations...how is that helpful to someone who has been through the dreadful experience of considering taking their life?

I actually think that it is not a bad idea to champion home working for people with disabilities/long term health conditions but that means changing employers' attitudes and putting the right to flexibility and home working in law.

With the caveat that of course some people will not be able to work no matter what support is offered and should not be penalised.

I know GPs can't diagnose autism @Willyoujustbequiet The GP had to do the referral to the CDC, as the school wouldn't. The GP was told all the right things for the referral.

I don't know where you are in the country, but the CDC only did one assessment. The private ed psych report was written the way the relative wanted them to write it, as is often the way with private reports customers pay for.

They meet elements of the diagnostic criteria. As does every person on this planet, depending on each person's interpretation of those criteria.

There is no doubt whatsoever that the relative is certainly able to work.

"They meet elements of the diagnostic criteria. As does every person on this planet, depending on each person's interpretation of those criteria."

Huh? I'm guessing you haven't actually read the criteria properly?

PIP can be claimed by people who work. It's meant to cover some of the extra costs caused by disability.

I think it’s something to do with the increasing recognition of female autism.

My dd was diagnosed ASD end of last year at 16. I always thought there was something, but she didn’t fit the male criteria. So when she was little she never lined things up,she smiled, maintained eye contact, was an early and articulate talker, and mixed easily. She would just have awful meltdowns after school. Age 9 she became increasingly anxious. This is often the first thing ASd girls present with. But she was just diagnosed with anxiety.

She seemed to function fine in every way until 14 or so.

I got ME when I was 27 and haven’t been able to work since. I am now 52 and have been bedridden for the last ten years with severe ME. I have missed out on a career, family, social life and more.

A form of long covid has some overlapping symptoms with ME (a virus usually triggers ME). It’s heartbreaking seeing online many young people significantly disabled by long covid. Some are recovering after a year or so but still a sizeable number still v ill 3 years on. Only around 5% of people with ME make full recoveries. Whilst covid continues in the population more young people will develop LC. There are no effective biomedical treatments for ME, at it has been under researched due to it being wrongly framed until v recently as a mainly behavioural condition and not the medical chronic disease it is. If there had been these treatments, they may have helped those with LC that presents similar to ME.

Oh my God, Crispedia, I’m so sorry to hear what you’re going through.

Hi just seen your post. The g.p is talking rubbish. I have problems with my back, sictica and arthritis, came on in jan this year. I've had two mri scans, physio and I'm under the pain clinic, hoping the different injections will help. I get pain relief prescribed by my g.p

Thank you that is v kind of you @Kirstyshine As well as the illness itself, the gaslighting from much of the medical world for years was v difficult. People with ME were wrongly told they should be expected to return to health after a course of counselling and graded exercise therapy. Due to the energy dysfunction in ME exercise makes us worse, sometimes permanently. Cruel advice.

NICE guidelines for ME finally dropped recommending graded exercise in 2021 and better awareness by doctors is slowly happening but still a way to go. It was clear that the same group of psychs (one was knighted a Sir) that harmfully dominated ME for so long have been trying to wrongly frame LC as behavioural too. However, there are more doctors globally doing biomedical research revealing pathophysiology (showing in patients with ME too) this time so don’t think they will succeed this time v thankfully.

Thinking about a couple of people I know who will never be able to work because of severe disability and learning disability - either they were born very prematurely or perhaps once wouldn't have survived birth or their first year because of genetic problems or an extremely difficult birth. Medical advances mean they have survived which is amazing for them but they need round the clock care which will continue for their entire lives. And sadly their families have had to fight and fight to get that support.

ME is essentially a disability as well as a disease and should be treated with the same respect. No one tells a blind or deaf person to try harder do they? They need to rest as long as needed to improve or potentially forever if that’s how their condition works out. At the same time they should probably have their passports and driving licenses taken away so they don’t cause themselves undue stress by unnecessary long travel activities.

I'd love to know the fuller story behind the autism/epilepsy/sight/hearing line !

Yeah, me too, I want to know more, but still, none of those are the headliner LC symptoms either, so still not shoe-horning into "lots of people have LC" belief.

I looked hard (for 5 minutes) for original report to see what the details were, but didn't find it. Hearing & seeing lead the list, you'd think they were dominant reasons. Does everyone suddenly have NF2? I'd love someone to find the original analysis.

I think the article says the figures come from the ONS labour force study.

That would be the labour force study that suspended its results in October 2023 due to data quality concerns whilst it did some "experimental statisitics" to try to resolve the data issues and admits that the respondants from the 16-24 age bracket were under represented, along with renters.

At the same time they should probably have their passports and driving licenses taken away so they don’t cause themselves undue stress by unnecessary long travel activities.

Blimey, I have been too sick now with ME to travel abroad for 19 years. Between years 2 and 6 of ME I managed 2 trips abroad using disability assistance. I would be horrified the state taking away my passport, awful suggestion!

This is obviously a joke/spoof, right?

No one could seriously be advocating stripping disabled people of basic human rights and treating them like convicted criminals.

I have seen one study estimate 1.4% of people with covid may develop long covid and perhaps 10% of that 1.4% develop a form of long covid that has some overlapping symptoms with ME. As so many catch covid this still translates into a few thousand at least. (It is estimated 20,000 children have ME). As said above, some with the form of LC that shares some overlapping symptoms with ME are thankfully recovering after a year or so but still a fair few still disabled by it 3 years on.

Fatigue is listed as a long covid symptom but for those who have a form of long covid (LC is an umbrella term) that has some overlapping symptoms with ME, it is, like ME, not fatigue that can reduce daily functioning so considerably, but post exertional symptom exacerbation (PESE) or PEM. ‘Fatigue’ doesn’t capture this feature of the illness at all, but too many articles and studies on LC list this aspect as solely fatigue.

Post-exertional symptom exacerbation can be triggered by physical, cognitive, mental, social or emotional exertions, and varies among different people. The worsening of symptoms by exertion can happen immediately, or can happen 24-72 hours after exertion. This can make it difficult to predict or manage. It can take days, weeks or even months to recover from post-exertional symptom exacerbation. The exhaustion caused by exertion can be very disabling, as it can affect different symptoms or parts of the body. Post-exertional symptom exacerbation is a feature of the inability to produce sufficient energy on demand and is characteristic among those with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

This is a good video interviewing ME doctors on post exertional symptom exacerbation (PESE)/post exertional malaise (PEM) for anyone interested. For the mildly affected a short walk may trigger PESE for the most severely affecting turning over in bed can trigger it. PESE as well as draining you of all energy triggers flu like symptoms and you can feel ghastly ill with increased sensory sensitivity. ‘Fatigue’ doesn’t capture the illness at all. www.dialogues-mecfs.co.uk/films/post-exertional-malaise/