BBC Look North Evening Show. Dr Alexis Gilbert who has #LongCovid and has also been diagnosed with #MECFS and interview with Dr @BinitaKane
Adam’s Broken Battery YouTube Channel here as well as his TV and Radio Clips library here
In this SciShow video, Stefan Chin presents a snappy summary that trying to exercise your way out of ME/CFS is going to end in tears. They say that “ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, is way more than being tired at the end of the day. And, contrary to situations like that, exercise is the last thing you’d want to do.”
There are over 1400 comments on the video here on YouTube if you are keen to hear what people are saying or to give feedback yourself:
Stefan Chin on SciShow: Exercise Actually Makes Chronic Fatigue Syndrome Worse
Dianna Cowern, also known as “The Physics Girl” after her massively successful YouTube channel, wants people to know about the disease ME/CFS. In May 2025, Dianna Cowern updates us on her journey and recovery following a Covid infection in Autumn of 2023. Dianna reveals that she’s made progress and beginning to be able to enjoy some limited activities. Whilst she is recovering, she parallels the continued severe suffering of her friend Tobias Schweikert who lives in Germany, reminding us that so much more needs to be done worldwide for those who continue to suffer, with no end in sight.
Kyle (Dianna’s Husband): “It’s been over two years of being sick essentially approaching two years of like bed bound her quality of life is unimaginably low right now still she can’t get out of bed she can’t clean herself she can’t take a shower she can’t…”
Derek Muller (Veritasium): “I think the thing that’s shocking to me as well is like this lack of ability to have anything really to occupy your mind right like it’s not like she can’t really read or audio books or movies.”
We have now taken legal advice, thanks to your donations, and instructed our lawyers to proceed with sending a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to the court for Judicial Review of the Final Delivery Plan for ME/cfs) it means there are inconsistencies within the Plan that make it vulnerable to legal challenge.
We doubt this vulnerability is what was intended in the drafting of the Plan. We know people with ME/cfs have had cross party political support for decades. We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will be resolved without a court hearing being necessary. People living with ME, and the NHS staff trying their best to deliver safe clinical care without clear, succinct, safe clinical guidance to follow, deserve nothing less.
If the reply from DHSC to our letter is not satisfactory, and the inconsistencies we have identified in the Final Delivery Plan persist, we must apply for Judical Review by 21 October at the latest.
At this stage, we cannot share with you the advice we have been given but we will explain everything the very first chance we get. Sorry if that’s frustrating; it is for us! If the case does come to court the legal arguments will be made public that way but we hope the DHSC will make the changes needed sooner. The changes needed are not huge, they are efficient, and they will not cost the NHS more money than is already being wasted on catastrophic mismanagement of ME.
This is a first step, made possible only by your generosity and the long history of injustice that got us here. We are honoroued by so many of you sharing your time, comments and money with us. We could not have got so far without you. We rely on your feedback on social media to be sure the aims of #Justice4ME reach the widest audience possible.
More updates will follow in the coming weeks, including additional endorsements and images on our homepage. Meanwhile, please keep on sharing our campaign with everyone you know, however unlikely! Since we met the initial fundraising target in our launch week, the campaign to raise the final third for this first phase will continue throughout October.
Thank you, thank you, thank you for helping make #Justice4ME a serious proposition. Let’s have our NHS knowing what to do about ME without doubts, indecision or delays – all over the UK, please.
#JusticeforME
https://petition.parliament.uk/petitions/721547
https://www.change.org/p/stop-the-new-4-point-pip-rule
The Issue
I am a chronically ill Independent PIP Consultant with the goal of providing the kind of support and awareness I WISH was available when I first became chronically ill (I was 29 years old, I am now 47).
I am entitled to and do claim PIP myself; this funding changed my life. The Government’s recent decision to introduce a new rule is threatening this lifeline for those who have fought through the invasive, degrading assessment process and finally won. They/we depend on this support.
They are saying you now need a MINIMUM score of 4 points in at least ONE daily living activity to keep/get the daily living funding from 2026 (new claims and on reviews). This change WILL deny access to the daily living component to those who are genuinely in need but cannot score the 4 points in a single activity. We know through our experiences the way the scores are allocated rarely match our daily life, many should have had 4 points but do not get this result.
The Government must reconsider this change. We MUST protect the most vulnerable among us and ensure their dignity through compassionate support. Therefore, we need to urge our Government to reassess this new rule.
We need 100,000 signatures and then this (legally) must be discussed in parliament. I am not trying to be our spokesperson but I am trying to unite us. We need to raise our voices so loudly that activists and specialists can continue fighting on our behalf. This is how we help ourselves and those that cannot fight for themselves.
Remember, YOU, your family, friends, neighbours and co-workers CAN all sign this petition
It is NOT acceptable to target a vulnerable community WE MUST SPEAK UP and be HEARD
Please, sign this petition now, please sign for the chronically ill, sign for fairness, and sign for justice.
Dr Rageshri Dhairyawan writes “Reflect, Collaborate and Listen” which examines why doctors don’t listen, and the urgent need to rebalance the power dynamic in the patient – doctor relationship.”
See the full article here in the Lancet – It is free to download (after registration, which is quite easy).
The abstract continues: “Anxieties about malingering or feigned illness are at least a thousand years old in the West”, argued public health ethicist Daniel S Goldberg in a paper on the history of “malingerers”. He gives several examples including Arnau de Vilanova who in the 13th century was so worried that patients were fooling him, by passing off other people’s urine samples as their own, that he wrote 19 pieces of advice for other physicians to spot the fraudulent. In this way, Goldberg shows how physicians have doubted the testimonies of patients for a very long time.
