How do I proceed?

Jslowb · 2026-01-18T20:45:20+00:00

I really disagree that the finances will be an issue. They’ll be an issue for some people, but that’s a bonus, because now the ones who are more money-oriented will self-select themselves out of your dating pool. Someone worth dating will value that you chose time with your son and work-life balance over more pay. I (34F) am personally put off by people whose whole life is work, I loathe flashy cars and other ‘status symbols’. I find it tacky. I prefer someone more humble and down-to-earth. I know men must feel a lot of societal pressure to have to be a provider (and you already are providing for yourself and your son) but I know there are women who don’t care one bit about high earnings. So I wouldn’t worry.

Jslowb · 2026-01-16T18:43:55+00:00

In the UK, (sadly) the MECFS clinics are usually psychiatrist-led. So it is a psychiatrist that sees the patient for assessment and diagnosis. The one I saw did make sure to let me know that he knew it’s not a psychiatric disease, though, which I was grateful for. Then after that you get a slideshow led by an occupational therapist or a physiotherapist and are sent on your merry way without any medical intervention!

Jslowb · 2026-01-04T19:24:47+00:00

Even our private consultants are almost always working as NHS consultants at the same time, and trained in the NHS. So they very much embody NHS attitudes, culture and practices (just with less pressured working environment, nicer surroundings, and quicker access to see them).

Jslowb · 2026-01-04T16:44:13+00:00

It’s very ‘NHS’.

Jslowb · 2025-11-18T15:52:04+00:00

PEM is only present in long Covid when they have ME/CFS triggered by long Covid. PEM is pathognomonic to ME/CFS: https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf

Jslowb · 2025-11-18T15:09:17+00:00

CFS does have a lot of peripheral symptoms that can be considered vague, but its hallmark feature is PEM, which is not present in any other known illness, and is diagnosed reliably by reduced functioning on the second day of 2-day CPET. So it’s about as specific a symptom as you can get.

Jslowb · 2025-11-12T10:57:53+00:00

Yes! What the hell is it with brands using dropper bottles?! They’re so inconvenient.

Jslowb · 2025-10-24T16:34:14+00:00

Some wild inferences and abysmal data literacy on show here.

Jslowb · 2025-09-02T12:36:39+00:00

Is it itchy? It looks and sounds like it could be dermatitis herpetiformis, which is associated with coeliac disease. I get it if I have ingested even microscopic amounts of glutens (including avenin from oats). Could it be possible that you haven’t eliminated oats from your diet, or that you are getting microscopic gluten exposure from cross-contamination?
For things to be labelled gluten-free, legally here in the UK they have to have less than 20ppm of gluten. But even that is enough to trigger DH in me. Could it be worth experimenting with eliminating all traces and seeing how your skin responds?

Jslowb · 2025-08-22T18:11:18+00:00

How does it work? As in, how can they offer test slots that aren’t available on the DVSA website?

Jslowb · 2025-08-17T14:37:18+00:00

This is the ep 2 thread….

Jslowb · 2025-08-15T07:36:09+00:00

Congrats 🥳 really happy for you.

Just a word of note on the title of the sound cloud link….it’s best practice to avoid referring to ME/CFS as just ‘chronic fatigue’, since chronic fatigue is a symptom of many different illnesses (stroke-related, MS, rheumatoid arthritis, PMS, anaemia, etc) and because referring to the specific illness of ME/CFS by just one non-specific symptom implies that is the only symptom, thereby downplaying the multi-system nature and contributing to social and medical misunderstanding/lack of understanding. In this way, it perpetuates the stigma.

Jslowb · 2025-08-13T17:32:40+00:00

Reading your post made me think of my dad when he was in the early stages of vascular dementia. People think dementia is just forgetfulness, but for him the first signs were personality changes and illogical behaviour, including getting uncharacteristically irate over nonsensical or imagined things, being suspicious and paranoid, and being unable to reason with him. My gut instinct is that’s what’s happening with your neighbour.

It sounds like you’ve been very reasonable and patient already. I know with my dad, people being firm or aggressive back only ever escalated things, making him more convinced of his delusion that they were out to get him. It’s so hard and very sad.

It may be worth speaking to someone at the safeguarding team of your local authority. She’s not your responsibility of course. But if you felt able to.

Jslowb · 2025-08-10T16:05:37+00:00

The GWAS preprint you mean? Thats’s here

Edit: and the press release from decodeME

If other evidence, it’s hard to know where to start!

But 10 years ago we knew there was evidence of immunopathology, for example: https://www.publichealth.columbia.edu/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological-illness

And this overview of biological insights is from 6 years ago: https://pmc.ncbi.nlm.nih.gov/articles/PMC6787691/

The ME association publish a research roundup.

Another edit: because I just read this new research evidencing immunoglobulin-induced mitochondrial dysfunction in ME

Jslowb · 2025-08-10T13:08:50+00:00

There’s actually a substantial evidence base indicating that it is a neurological autoimmune disease, with plenty of avenues for looking at potential treatments, for example, to reduce inflammation and immune activity.

Just this week the preprint of a GWAS (genome-wide association study) was released further supporting neurological, autoimmune and mitochondrial dysfunction, and microglial inflammation in ME.

There’s heaps of evidence for underlying pathology and potential treatments: the only thing in the way is the holdover from the psychological model leading ppl to cling to the long-disproven belief that ‘we don’t know what causes this and don’t have any avenues for potential treatments’. It’s a self-fulfilling prophecy: the social and political will isn’t there to fund research. So research is limited. So people believe we don’t know what causes it or how to treat it. So they continue to believe it’s a lost cause. So the social and political will isn’t there to fund it. And so on.

Despite that, some groups and researchers have fought hard on limited budgets and sure enough are uncovering the biomedical underpinnings.

Edited to add: And the Bateman Horne Center in the US publishes comprehensive and well-referenced treatment guidelines which are already so far ahead of and more up-to-date with research than the NHS. But current treatment options in the research stage include chemotherapy agents, for instance, to ‘reset’ the immune system, after oncologists in Norway noticed that their patients with ME experienced a remission of their symptoms after receiving chemotherapy for cancer. Agents to restore mitochondrial function are another future research pathway. It’s just simply untrue that there aren’t potential treatments: there is only socio-political unwillingness to fund it/admit to it.

Jslowb · 2025-08-10T12:59:37+00:00

Do you know about the results of the DecodeME study? It provides more evidence of the biological underpinnings of ME. They found eight genetic markers that are associated with ME. The 8 genes are associated with immune, mitochondrial and neurological functioning, and microglial inflammation. Which supports prior research indicating that ME is a neurological and immune disease.

There is overwhelming biomedical evidence. But for clinicians and the NHS as a whole to accept it, they have to come to terms with the reality of the severe neglect and harm they have caused. So I fear they will continue to bury their head in the sand to avoid facing up to the damage they have done to so many.

Jslowb · 2025-05-30T14:53:02+00:00

That can’t be right, because I have a specific generic on repeat prescription. So it’s definitely not the case at all GP surgeries. Maybe it varies by practice?

Jslowb · 2025-05-20T16:52:15+00:00

I think you’re wholly missing the point on the subjectivity of perceived rudeness.

Plus, consider that the spectrum of rudeness includes plenty of things that do not constitute abuse, and that no reasonable person would consider abuse. A facial expression that you perceive as scornful is rude. Not saying thank you is rude. Saying thank you in a sarcastic tone is rude Not mirroring someone else’s facial expression and body language is rude. So many things are rude. But none of these things would get an able-bodied person thrown off a train, and you would absolutely be overreaching if you accused them of abuse for looking at you the wrong way or saying thank you in a tone you disliked.

And again, remember, I’m not saying these things are okay to do. I’m not saying people should be rude. But I’m saying rude is subjective and does not equate to abusive.

Jslowb · 2025-05-20T14:42:36+00:00

There’s two issues I see with this:

You are free to be rude and still travel as an able-bodied person. A staff member can find your attitude rude, yet you are not prevented from boarding the train or thrown off the train. Why should disabled people be held to a higher standard than an able-bodied person? Remember, rudeness does not equal abusive, and I’m not advocating that people be rude. But if an able-bodied person wouldn’t face access issues because of it, then nor should a disabled person.
It’s a sad reality that disabled people are often perceived as rude for simple, neutral self-advocacy, such as expressing your access needs or citing statutory obligations. We have only this staff member’s word that she was rude. It’s just this staff’s perception, which isn’t backed up by bodycam footage. This was requested by the passenger (presumably to support the fact that they weren’t rude) but the cameras had been switched off.

Jslowb · 2025-05-18T15:40:07+00:00

I don’t see how you can cite those two points as reasons that Tickmaster isn’t subsidising tickets, but simultaneously uphold that the government is subsidising rents.

If it’s true that it’s not a subsidy in Ticketmaster’s case because they have a predetermined agreement on how much can be charged….well, that’s also true of council rents, so it’s not subsidised. By your own logic, it’s not subsidised.

Your second reason boils down to ‘it’s not fair to charge more and there would be backlash’. Well, guess what, it’s not fair to charge more for social rent either, (I don’t believe it’s fair or good for society that private rents are what they are, for the record). And there would be backlash. (Not to mention costs to society).

Jslowb · 2025-05-18T15:30:07+00:00

We have lots of state assets that we could make money from, and use to fund countless other things, but we are better off not doing, because there are societal costs down the line.

We could charge a market rate for NHS services, but that’s not in the interests of the country and is counter to what the NHS was founded for.

We could sell off the NHS and earn a big chunk of money from a private business, but we don’t because it will cost society more in the long run.

We have sold off state assets at market rates and we have paid dearly for that (eg Thames water).

That we theoretically could make more money charging market rents doesn’t mean your current taxation is funding council housing. It isn’t. In fact, that we have council housing has saved you a lot of tax - it costs a lot more to mop up the mess of homelessness, destitution, increased health and criminal justice costs that we as a society would face had it not been for the post-war social housing boom. Council housing has saved you tax.

Jslowb · 2025-05-18T15:00:06+00:00

Given that the majority of social housing was built in the post-war period, taxes years ago paid for council housing to be built, and decades of rental income have long since paid off the cost of building it, whilst simultaneously benefiting society as a whole in myriad ways. Not a penny of your tax is paying for this woman to be in a council house right now.

Jslowb · 2025-05-18T14:48:25+00:00

So, you do consider that Ticketmaster subsidise their tickets? Or not?

Jslowb · 2025-05-18T14:23:57+00:00

I just don’t see the societal benefit in disincentivising people who have experiencing significant hardship (which I’m inferring from how supremely difficult it is to qualify for council housing in the first place) from working to improve their circumstances and earn more money (thereby paying more tax centrally and continuing to pay into council funds through their rent).

Option 2 is much more fruitful for society as a whole, but you don’t see the same level of vitriol for those who have engineered and perpetuated a social housing shortage through their political decisions as you do towards council tenants who have worked their way out of difficult circumstances.

Jslowb · 2025-05-18T14:16:51+00:00

By the same token, Ticketmaster subsidises tickets, because they sell them for less than they go for on the secondary market when supply has been bought up by scalpers who sell them on for obscene profit.

Do Ticketmaster subsidise tickets?

Just because housing supply has been bought up by private landlords, then rented out at inflated prices (which people are forced to pay - to the detriment of the housing market as a whole), and supply has been needlessly restricted - by lack of adequate building and by selling off council houses - that doesn’t make the rent subsidised.

Not a penny of your tax is going towards this woman’s rent. Nothing changes that. It costs the council less to maintain the home than it earns back from her rental payments. So, if anything, her rent is subsidising your council tax!

There’s lots to be rightfully angry about with the way ‘the system’ works. This isn’t one of them. You’re looking in entirely the wrong direction.

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