News from Scotland

Have Your Voice Heard - Learning about ME/CFS - Consultation Survey

Please take a few minutes to take our survey.
www.smartsurvey.co.uk www.smartsurvey.co.uk

Throughout February 2026 we are hoping to reach out to as many people as possible, with the survey set to close on 28th February 2026.​


Have Your Voice Heard - Learning about ME/CFS - Consultation Survey​


The Covid Rehabilitation service within NHS Arran & Ayrshire (Scotland) has received additional temporary funding to accommodate people living with conditions like Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).

As we are already established as a long covid service, we are particularly interested in hearing more from those with ME/CFS. If you have ME/CFS or have a friend or family member with ME/CFS, we would like to hear from you. Throughout February 2026 we are hoping to reach out to as many people as possible, with the survey set to close on 28th February 2026.

What we are looking to learn is: what is important to you in terms of symptom presentation and management, what do you want to see in a service, what barriers have you experienced in accessing services, and what has helped?

We are happy to hear any thoughts you have. Please do not worry about writing answers that feel like the 'right' answer for each question; the main questions are open format so that you can write whatever comes to mind. The responses will be used to help us shape the development of our service, so that we can deliver appropriate care.

This is an anonymous survey: we will not ask you for any identifying information, and any information you give will be treated as confidential. If you have any further questions, you can contact us at the email address below.

Thank you, and we are looking forward to hearing from you.

Covid19.Rehab@aapct.scot.nhs.uk
Project Lead: Anya Owen (she/her), Assistant Psychologist
HARP Covid Rehabilitation
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I've replied. The survey isn't long. You can sign up to be kept informed about the outcome of the consultation. I hope many people will tell this service what good care would look like.

e.g.
empathetic and informed care,
clinicians who acknowledge that they don't have treatments,
a careful diagnostic process and ongoing monitoring for emerging health conditions,
no bullshit treatments or causal explanations, no GET,
no unevidenced treatments outside high quality trials,
advocacy for people with ME/CFS
involvement in biomedical research programmes,
particular support for people with severe ME/CFS and their carers
 
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Haven't seen any other information, might be on xitter or facebook? No hits for a Jura health clinic on the forum.

www.drclairetaylor.com

Long Covid Clinic | Dr Claire Taylor

Dr Claire Taylor Long Covid, MCAS, POTS, ME/CFS Specialist
www.drclairetaylor.com www.drclairetaylor.com
We are very sorry but due to incessant cyberbullying Dr Taylor is no longer working at Jura health. We are aware of a few ex-patients who are spreading misinformation about the service. Due to the intensity of the harassment, Dr Taylor has not been able to run a service normally for the past 6 weeks.

As Dr Taylor was given no notice of the clinic closing, she does need some time to wrap everything up. Therefore, if you are waiting on a report, please do not listen to anyone online who says you will not get one. No-one will be left without a letter. Dr Taylor cares deeply about her patients and would not leave them without everything they are due. Additionally, anyone who has paid for an appointment will of course be given a refund. This is not the case and just another way of targeting Dr Taylor.

We are still answering emails- please be patient with us as there are only 2 of us and lots of patients worried about their ongoing care. We are also calling patients, but again it will take time to do this.

Dr Taylor has dedicated her career to helping patients unseen by a system that does not understand their disease. Please remember the Dr Taylor that you know and not the fictional one being described online. She would never desert her patients. It has been devastating for her to watch a few people destroy a service that has helped so many.

Most upsetting is that Dr Taylor cannot prescribe medication without a clinic. She would have avoided this situation if at all possible, and is aware that many people rely on the medication she prescribes. She has absolutely no control over this. She can only suggest asking your GP or another private doctor if they are willing to prescribe your medication.

Contrary to what is being said, Police Scotland are involved due to threats made to Dr Taylor, the host clinic and the sheer scale of the harassment. The same people who claim what they are doing is free speech are deleting any positive comments made about Dr Taylor. That alone speaks volumes.

Neither Dr Taylor nor myself will engage with these people online. Currently, there is an individual spreading a post claiming to be written by myself. Again, this is not true.

Please do not mistake our silence for not caring.

It has been an honour to be entrusted with looking after you.


May we meet again.


Jamie Taylor & Dr Claire Taylor

20/3/2026
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rvallee said:
Haven't seen any other information, might be on xitter or facebook? No hits for a Jura health clinic on the forum.
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There are stories on reddit.

I didn't read much but I gather a lot of people were waiting for letters from her for many months which meant the lack of treatment and documentation for work, benefits, etc. Seems like there were patient complaints to HIS (Health Improvement Scotland) who are investigating the case.
 
There's a police investigation underway as Dr Taylor was advised she was on a "hit list" and the social media pile on seems to have been " botted".
We had an appointment cancelled on the day of the appointment when this was coming to a head.

It's clear that there's been issue with admin/ management, and poor communication as well as health issues. It's sad that it has come to this. We need all the interested clinicians we can get.
 
Re funding for long covid clinics in Scotland, with ME/CFS tagged on as a " post infectious illness"
I've had feedback from NHS Ayrshire & Arran re their online survey which simply acknowledges a problem - it will be interesting to see what is actually done.
The data would be interesting- many highlighted initiatives which made them worse, which is a god starting point for any service.
PDF attached
 

Attachments

Inquiry commissions report on post-viral infection syndromes
www.covid19inquiry.scot

Inquiry commissions report on post-viral infection syndromes | Scottish COVID-19 Inquiry

The Inquiry has published a report by Professors Brightling and Evans on post-viral and other post-acute infection syndromes, including long COVID.
www.covid19inquiry.scot

The Scottish COVID-19 Inquiry has published a report commissioned from independent experts on post-viral and other post-acute infection syndromes, including long COVID. The report examines what was known about long-term health consequences of infectious diseases before COVID-19, and their implications for pandemic preparedness.
 
As a report it's not all terrible, but it shows how little real accountability there is at the global level when it comes to public health and medicine. This is basically an anatomy of a disaster that is far more egregious than Chernobyl (which was mainly caused by politically-censored details on the reactor not being made available to the engineers), yet is basically met with the equivalent of a shrug and a "ah well, whacha gonna do?" Here everyone had access to relevant information and they just refused to act, mainly because this is how they have always failed to act before.

The tobacco industry faced far more accountability for what it did, and it basically didn't face any, just a few fines that made it the cost of doing business. This, here, is a total breakdown of what those systems are capable of and supposed to be doing, and it's simply not reflected in the report. Nothing will come of it, just as nothing is coming out of research or clinical care for those suffering.

This total lack of real accountability certainly explains why the whole profession failed miserably, and also why it will fail the next time around. This isn't just systemic failure, it's intentional systemic failure, where the system simply refuses to correct anything it does simply because it is not subject to even the most basic level of accountability. Primary school children are held far more accountable for their words than this. Massive failure all-around.
 
Interesting as my understanding is that Dr Taylor is no longer with Jura Health but is setting up her own clinic ( I could be wrong)

The report seems simply to be a couple of paragraph updates on the March inspection , the action plan being signed off by Judith Glasgow ( major shareholder) of Jura health a couple of weeks ago?

1 Progress since our last inspection

What the service had done to meet the recommendations we made at our last inspection on 29 March 2023

Recommendation -
The service should ensure its complaints policy is easily available for patients to make sure they are aware of how to make a complaint or raise a concern about their care and treatment.
Action taken -
The service displayed its complaints policy in the waiting area of the reception for all patients and potential patients to view and access if required.

Recommendation -
The service should keep full employment records of all staff to include identity checks, qualifications and occupational health records.
Action taken -
The service kept employment records for all staff, which included identity checks, qualifications and occupational health records.

ETA - the report is based on the 13th March 2026 inspection
Subsequent inspection 29th March 2026 noted under " progress " above - normally this is due to complaints
 
Amw66 said:
Interesting as my understanding is that Dr Taylor is no longer with Jura Health but is setting up her own clinic ( I could be wrong)
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Yeah, it was announced (even) on her personal website that she was no longer with them (post #123).
Can't comment on the latter as I don't know anything about it.

I find this sentence interesting. It's from the aforementioned announcement signed by her and her husband:
As Dr Taylor was given no notice of the clinic closing, she does need some time to wrap everything up.
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Hm.
 
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