Cambridge ME group

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CBME is a support group based in UK, for people with , , , or , including triggered by .

20/11/2025

“WE HEAR YOU, WE VALUE YOU, WE BELIEVE YOU”

- Ashley Dalton, Parliamentary Under-Secretary of State for Public Health and Prevention : The government minister winding up the Westminster debate on ME provision on 19th November er.

Her presence at the debate was a positive sign - at least the government isn’t ignoring the issue.

There were several good speakers, including Jeremy Hunt! He was a bit shaky on his facts but was clearly taking messages from his constituents seriously.

Tessa Munt (LD, called the debate) spoke very well, and I have to say was more impressive than Jo Platt, the chair of the all party Parliamentary groups on ME and on LC.

The general tenor was, okay it’s all well and good to have published the plan for ME, what are you doing about actually implementing it? Are you actually going to create NHS units for very severely ill patients? And why in God‘s name isn’t there a commitment to build up and properly fund research in this country?

Noticeably absent was our very own Cambridge MP, Daniel Zeichner. I wrote and urged him to go; I got exactly what after 10 years of trying to get him to do anything significant about ME I expect to get: a no.

This (paywalled) New Scientist article is the first I’ve seen confirming what has long been widely suspected: women have...
12/11/2025

This (paywalled) New Scientist article is the first I’ve seen confirming what has long been widely suspected: women have stronger immune systems than men. They handle infection better, they respond better to vaccines, they retain immunity longer.

This may well be why women live longer.

The reason for this is that they have two X chromosomes, each loaded with immune genes. Although one copy is supposed to be silenced, around 20% of its genes remain active, giving a distinctly wider range of options to the immune system when it responds to infections.

Unfortunately, this has a downside. The female immune system can be over-reactive – 80% of autoimmune sufferers are women. The article mentions ME and long Covid as likely consequences of this effect.

It ends by urging that medical research should take account of this massive difference when designing vaccines, cancer treatments and autoimmune treatments. 

https://www.newscientist.com/article/2501447-women-have-supercharged-immune-systems-and-we-now-know-why/

Being born with two X chromosomes brings a host of health benefits, and recognising this could lead to personalised medical treatments for men and wome

https://www.medscape.com/viewarticle/no-evidence-supports-using-graded-exercise-myalgic-2025a1000tuf?fbclid=IwZnRzaAN1rW...
03/11/2025

https://www.medscape.com/viewarticle/no-evidence-supports-using-graded-exercise-myalgic-2025a1000tuf?fbclid=IwZnRzaAN1rW9leHRuA2FlbQIxMQABHrAS3qbwS_yHUNr6tKUW_LkgW1m2CsRH4_hQfxTIgRt5iYMoszFYjwyfnzFx_aem_ZtG3tZWuWL45TJOdx-isow&icd=login_success_email_match_fpf

It’s good to see explicit recognition of the centrality of PEM in a medical research publication.

Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’

An interesting study showing worthwhile gains from hyperbaric oxygen therapy.
02/11/2025

An interesting study showing worthwhile gains from hyperbaric oxygen therapy.

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder characterized by profound fatigue, cognitive impairment, autonomic dysfunction, and exertional intolerance with strongly impaired physical functioning. Hyperbaric oxygen therapy (HBOT) has been propose...

Hot on the heels of the DecodeME study, two studies of the genetics of fibromyalgia are going to be published. Like Deco...
28/10/2025

Hot on the heels of the DecodeME study, two studies of the genetics of fibromyalgia are going to be published. Like DecodeME, both are genome wide association studies (GWAS). They seem to implicate the central nervous system/brain. However, at the same time, other work is implicating autoimmunity and the peripheral nervous system.
All in all, this indicates strong progress towards understanding fibro; but we haven’t got there yet.

https://www.newscientist.com/article/2500797-unpicking-the-genetics-of-fibromyalgia-sheds-new-light-on-its-causes/

Fibromyalgia, which causes chronic pain all over the body, is poorly understood, but two studies – made up of millions of participants – are helping us get to the roots of the condition

Yet again, a LABOUR Government is targeting the most vulnerable in society while simultaneously advancing the authoritar...
26/10/2025

Yet again, a LABOUR Government is targeting the most vulnerable in society while simultaneously advancing the authoritarian, illiberal agenda that has marked previous conservative administration.

Our members are well acquainted with the dishonesty and perniciousness with which DWP agents are capable of behaving. Going after claimants in this way is appalling.

It also makes no sense – levels of benefit Fraud are rock bottom. If you want to stop Fraud, go after the tax Dodgers!
Daniel Zeichner

Government plans under controversial new legislation to give some Department for Work and Pensions (DWP) staff “morally dubious” powers to use force against benefit claimants have been derailed by …

What a brilliant protest! Wouldn’t it be great if we could replicate this in the UK for ME Awareness Day?
17/10/2025

What a brilliant protest! Wouldn’t it be great if we could replicate this in the UK for ME Awareness Day?

14/10/2025

Action for ME big Survey

The charity Action for ME surveys the ME community every few years to gather data to inform their campaigns and their support work. It would be incredibly helpful to them if you would complete it.

The survey is quite long, but they say you can break off at any point and come back to it(presumably you need to leave the browser page open though!)

https://durhambs.az1.qualtrics.com/jfe/form/SV_1OdW11dDLmKnKxE

This is Action for ME's Big Survey 2025. This survey is for adults in the UK who live with ME or who live with Long Covid and experience ME symptoms, whether or not they have a diagnosis of ME. It is open until 27 January 2026.

Let’s hope this makes an impact
14/10/2025

Let’s hope this makes an impact

We are delighted to confirm that Cat Smith MP has been successful in securing a debate on PoTS at Westminster Hall, on 14th October at 11am.

We now need your support and urge you to write to your MP requesting that they attend this debate.

We have produced a template letter and it can be done using our quick and easy software in less than a minute.
Please visit our website for further details - https://www.potsuk.org/westminster-hall-debate-on-pots-tues-14th-october-at-11am/

Encourage your friends and families to do this as well. The more emails the MPs receive, the more likely they are to attend.

This is our chance to make sure PoTS is heard in UK Parliament – but it won’t happen without YOU. 💜

https://skywriter.blue/pages/did:plc:codfx2epdduamfycuyi5fjpb/post/3m2ny4m7hdk2tGeorge certainly puts his finger squarel...
08/10/2025

https://skywriter.blue/pages/did:plc:codfx2epdduamfycuyi5fjpb/post/3m2ny4m7hdk2t

George certainly puts his finger squarely on the problem that people with ME have with Government and with the medical establishment. Now, can you help us find a solution?? 

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com

This is absolutely barbaric. A member of our group passed way recently and thanks to Arthur Rank her passing was dignifi...
05/10/2025

This is absolutely barbaric. A member of our group passed way recently and thanks to Arthur Rank her passing was dignified and peaceful, with family and friends able to visit her easily and freely during her last days.

Dr Rachel Clarke

This is Trevor Fisher, an inpatient in
in Cambridgeshire, speaking to
this week.
I am a palliative care specialist and Trevor’s interview has devastated me.
His hospice has just found out that in 6 months, Cambridge University Hospitals NHS Trust will withdraw its £800k funding.
This means that 9 of the hospice’s 16 beds will close, denying patients like Trevor the precious end-of-life care they need.
In total, 200 people a year in Cambridgeshire will now be forced to die in an overcrowded hospital instead of the hospice environment they so longed for. Some will doubtless end up dying on trolleys in corridors - we witness this far too often, these days & I can tell you, it is barbaric.


says it has made this “very difficult decision” following a “value for money assessment” - confirming what I have long known as a doctor, that too often, patients with terminal illnesses are treated as second class citizens whose lives simply don’t matter as much as other people's.
Yet the real responsibility here lies not with the NHS trust but with the current government, who is forcing the NHS nationwide to cut clinical services in order to meet impossible “efficiency savings” (what weasel words those are).
These cuts were necessary, say
, “in order to maintain core services within a reduced budget” - that is to say, the reduced budget they are now receiving from this government.

So this is on you,
, and on you You've chosen to do this & now patients like Trevor must live - and die - with your choices.
I believe that the measure of a civilised country is how well it cares for its most vulnerable members. The difference between politicians and me is that I look the palliative care patients they are failing in the eye.
So I will put it to you directly, Mr Streeting.
We are still a rich country capable of affording decent, humane palliative care for all. Do you really care so little for dying people that you are happy to fail them on your watch?

Thank you
for covering this story.




Trevor Fisher lying in a hospice bed, looking upward with a serious expression. The bed has white pillows and sheets. A Channel 4 News watermark is visible in the top left corner.

https://x.com/doctor_oxford/status/1974482414459113495

Link to Channel 4 News item:
https://www.channel4.com/news/budget-cuts-forcing-hospitals-to-pull-hospice-contracts

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