News from Scotland

rvallee said:
Weird that he appears not to blindly trust Wessely, who seems OK with this and probably reassures anyone who wants to hear that this is a problem perfectly under control.
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I still think of Sharpe and his 'boom time' for business, and that was before long covid. They must still be contemplating the pounds that could roll in. Though this time the sheer weight of numbers is likely to show up the emperors new clothes for what they are.
 
Lotto boost for ME group
PEOPLE suffering from life-limiting conditions are to benefit from a funding award.

The Dumfries and Galloway ME and Fibromyalgia Network has been given a bumper National Lottery Award of £9961, and they plan to use the funding to provide activities and support for people with Myalgic Encephalomyelitis (ME), Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), long covid, and their families/carers.

They will employ a development officer who will deliver this work, build partnerships with relevant organisations and raise the group’s profile.

Craig Woods, from Lochmaben, of the network, said: “This National Lottery funding will enable us to restart in-person meetings when the pandemic allows, whilst also helping us reach out to those housebound or distant through postal newsletters, social media and our website.

“No one should feel alone or without a network to turn to for mutual support and advice.

“We will also be able to repeat our craft project over winter – offering the ability to learn new skills in a relaxing and sociable online environment.

“We will also use our energies, with the support of the part-time worker we are able to take on, to raise awareness of these conditions and how they affect us to those in health and social care and beyond.”
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https://www.dng24.co.uk/lotto-boost-for-me-group/
 
Merged thread: Women's Health Plan

pdf of report here

https://www.gov.scot/binaries/content/documents/govscot/publications/strategy-plan/2021/08/womens-health-plan/documents/womens-health-plan-plan-2021-2024/womens-health-plan-plan-2021-2024/govscot:document/womens-health-plan-plan-2021-2024.pdf

Women wait longer to be diagnosed for many conditions and are more likely to wrongly have their physical symptoms ascribed to mental health issues. At the same time, they are more likely to experience depression and anxiety as a result of a physical long-term condition. The inequity in women’s access to health is compounded by factors including ethnicity, disability, sexual orientation and socio-economic background.
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taken from
CSP responds to new women’s health plan for Scotland:
https://www.csp.org.uk/news/2021-08-23-csp-responds-new-womens-health-plan-scotland
 
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readers letter in Edinburgh News

"
Give long Covid care to ME sufferers

It was good to learn that those with long Covid will get ongoing support from the NHS and government in the form of £100 million investment, ''£30 million of which will go towards an enhanced service for general practice to support long Covid care''.

The symptoms of long Covid are virtually identical to those of Myalgic Encephalomyelitis and yet, it would appear that those who have been diagnosed with ME get little support if any, other than psychiatric or relaxation techniques.

I recall many patients with ME being unable to get disability allowance and suchlike, and there are very few specialists in the UK and no adequate treatment for the majority.

Why is there such a vast gap between care and support from the government and NHS that will be offered to long Covid patients and so little for ME patients, when the symptoms appear to be one and the same?

Elaine Pomeransky, Edinburgh."
 
website funded by Scottish Government

CFS/ME has been recognised as a genuine illness by National and International Health Organisations around the world

This website is not designed to discuss chronic fatigue syndrome / M.E. in detail.

Fatigue may also occur as part of anxiety or depression, although its important to say that you don’t need to be anxious or depressed to have persistent and severe fatigue. Some people who become depressed develop anhedonia – that means loss of interest of pleasure in things – which can be confused with fatigue sometimes, although they are different things.

Fatigue is also a hallmark of numerous other medical conditions. Its especially important to think about treatable common ones such as:

  • Migraine – where it commonly occurs in the build up and afterwards).
  • Sleep apnoea – a common sleep condition where people block their airway repeatedly at night. Associated with snoring, weight gain, daytime drowsiness/sleepiness and morning headache.
  • Anaemia
  • Kidney and Liver problems
  • Underactive Thyroid
There is more information at NHS website- https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Stories of recovery from Chronic Fatigue Syndrome (CFS/ME)
Dr Henrik Vogt is a Norwegian general practitioner with a research interest in functional disorders.

CFS/ME describes persistent and disabling fatigue, usually with many other symptoms such as poor concentration. There are many online personal stories and organisations testifying to how horrendous and longlasting CFS/ME can be.

But patients faced with CFS/ME have often found it hard to find stories of recovery from which they might learn.

Dr Vogts website Recovery Norway – www.recoverynorway.org – aims to publishing stories of improvement which may be helpful to some readers of this website to try to redress the balance.
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https://www.neurosymptoms.org/en_US/symptoms/common-associated-symptoms/fatigue/

See this thread:
Website 'neurosymptoms.org' founded by Jon Stone, funded by the Scottish Government promoting Recovery Norge
 
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Whitecraig headteacher departing after ME diagnosis
The headteacher at Whitecraig Primary School is leaving the post at the Christmas break after being diagnosed with ME (myalgic encephalomyelitis).

Fiona Macartney told parents and carers in a letter, which was posted on social media, that she had been feeling “extremely unwell” and “struggling with a number of health issues.”

“With a recent diagnosis of ME, I have come to accept I cannot maintain the level of commitment needed full-time to support our children, staff and our community to thrive,” she said.
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https://www.eastlothiancourier.com/news/19755650.whitecraig-head-departing-diagnosis/
 
Link : https://theferret.scot/claim-100000-have-long-covid-mostly-true/

The Covid-19 pandemic continues to impact Scotland and the rest of the UK, with further restrictions in place as the Omicron variant spreads rapidly.

During the Scottish budget debate on 9 December, the effect of so-called ‘long Covid’ was brought up by Liberal Democrat leader, Alex Cole-Hamilton.

The Edinburgh Western MSP questioned why the Scottish Government’s budget made no mention of those suffering from the condition.
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Article continues...
 
Long Covid Scotland

I have first hand information that a person recovering from Covid and with difficulties recovering was admitted for tests on a particular problem. The test failed to find any physical problem.

The OT department discussed the case and decided that she was suffering from a functional problem resulting from a very stressful event that occurred when she contracted the illness last year. Previously very fit and active.

Major hospital Scotland Nov. 2021. A disgrace.
 
I've just read that the devolved Scottish disability benefit (Adult Disability Payment) is almost ready to be launched, and will be phased in from the end of March, replacing PIP and DLA. It looks like a great improvement, but we'll see... More info here: www.mygov.scot/adult-disability-payment-launch

If what Macpherson (MSP for social security) says in this article is true, then this will be amazing.
https://www.dailyrecord.co.uk/lifestyle/money/new-pip-benefit-rollout-confirmed-25742070

“We know people have found applying for DWP disability benefits stressful in the past. That is why we have listened to their experiences as we have designed our new system, and we are committed to doing things differently.

“We are introducing an improved application process and, in contrast to the DWP system, we are removing the burden from individuals to provide supporting information, so that the onus will instead be on Social Security Scotland to collect the information we require.”

The Scottish Government says the new, person-centred decision making process will ensure everyone is treated with dignity, fairness and respect.

“Importantly, we have abolished assessments in the form currently undertaken by the DWP. Instead, and only where required, we will hold person-centred consultations between the person and a Social Security Scotland health or social care practitioner, starting from a position of trust.”

Consultations will not involve functional examinations which currently involve a ‘physical test’ to demonstrate a claimant’s condition.

Another important change is for people with a terminal illness.

Mr Macpherson explained: “Another key difference in our new system will be around the definition of terminal illness. We will follow the judgement of clinicians instead of being tied to fixed periods of life expectancy, and anyone with a terminal illness will be fast tracked.
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Post copied from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion. There's more discussion there.


NICE Guideline To Be Implemented In Scotland

"NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development.

What is the plan?
The government plans to create practical guidance to support the implementation of the NICE recommendations in Scotland. This will be a new process and they have brought in an external consultant, Blake Stevenson, to interview stakeholders and advise on the best way to do this for patients and professionals.

#MEAction Scotland is a stakeholder and will engage as fully as possible with the process to achieve the best outcome for people with ME. The consultation will take place over the next couple of months and we will keep the community updated."

https://www.meaction.net/2022/02/03/nice-guideline-to-be-implemented-in-scotland/
 
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ME and Chronic Fatigue Syndrome
– in the Scottish Parliament on 24th February 2022.

Parliamentary debate in Scotland on ME/CFS
Michelle Thomson Scottish National Party
7. To ask the Scottish Government what steps are being taken to ensure access to care and support planning by a specialist team for people with ME and chronic fatigue syndrome, as recommended by the National Institute for Health and Care Excellence. (S6O-00786)
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https://www.theyworkforyou.com/sp/?id=2022-02-24.7.0&s=Chronic+Fatigue+Syndrome
 
pdf

From the Healthcare Quality and Improvement Directorate
Jason Leitch, National Clinical Director
Linda Pollock, Interim Director
_____________________ ____ ___
14
June 2022
_____________________ ____ ___
Addresses
Chief Executives, NHS Boards
Medical Directors, NHS Boards
Primary Care Leads, NHS Boards
Directors of Nursing & Midw if ery,
NHS Boards
Chief Officers of Integration Authorities
Allied Health Professional Leads Network
____________

Dear Colleague
MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME (ME/CFS): UPDATED CLINICAL GUIDANCE
As you may be aware, on 29 October 2021 the National Institute for Health and Care Excellence (NICE) published a new clinical guideline on managing and diagnosing ME/CFS.
The NICE guideline provides new recommendations on diagnosing and supporting people with ME/CFS including recommendations on symptom management, specialist and multidisciplinary care, frequency and structure of review, and care for people with severe or very severe ME/CFS. The guidance applies to children, young people and adults, and replaces the previous 2007 NICE guideline.
There is no SIGN guideline for ME/CFS. In the absence of a SIGN guideline, we expect clinicians to refer to other available guidance such as NICE guidelines. Following previous Scottish Government communications to highlight the publication of the draft NICE guidance on ME/CFS, I am now writing to draw your attention to two significant changes in recommended practice in the final published guideline.
Graded Exercise Therapy
The NICE guideline recommends not to offer therapy based on physical activity or exercise as a cure for ME/CFS, or that uses fixed incremental increases in physical activity or exercise. The guideline makes further recommendations to support clinicians in considering and offering personalised physical activity or exercise programmes to people with ME/CFS, where appropriate.

Cognitive Behavioural Therapy (CBT)
Cognitive Behavioural Therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. The NICE guideline recommends, however, that CBT should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness. The guideline makes further recommendations to support clinicians in discussing and delivering CBT to people with ME/CFS.
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https://www.sehd.scot.nhs.uk/publications/ME_CFS.pdf
 
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