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On the 22nd October Adam Price MS tabled a written question to the Health Secretary:
What plans does the Welsh Government or NHS Wales have to establish an all-Wales pathway for patients with severe ME/CFS in Wales, and training for doctors and other health professionals?
The Cabinet Secretary Jeremy Miles MS, replied on 31 October:
The Adferiad (Recovery) programme, which was initially set up to support people with long-Covid is improving support for people with ME/CFs. £8m of recurrent funding has been allocated to health boards since March 2023 to widen access to Adferiad-funded services to people with other long-term conditions whose rehabilitation and recovery needs are similar to people with Long-Covid, including ME/CFS, and to continue to develop and expand community-focused multi-disciplinary rehabilitation services, supported by referral pathways into secondary care for those who need it.
All health boards are developing services focusing on proactive care and targeting recovery and rehabilitation, promoting self-management and supported self-management through a multidisciplinary team approach. Co-production is an essential factor in service development, and I expect health boards to engage with people with lived experience in this process.
Plans are progressing to include pathways for ME/CFS and long-Covid in the community health pathways programme overseen by the National Clinical Lead for Health and Care Pathways Planned Care Programme. Community health pathways offer clinicians locally agreed information to make the right decisions together with patients, at the point of care. The pathways are designed primarily for general practice teams, but are also available to specialists, allied health professionals, and other health professionals.
WAMES is currently monitoring developments and Adam Price is in communication with constituents with the intention of finding out more.
Sylvia Penny, the Youth & Care Officer & Helpline coordinator for WAMES, is also an unpaid carer for her 2 adult children. One has severe ME and one has autism.
She spoke to ITV News at 6 about how difficult it is to find the financial and practical support she needs and that this has taken a toll on her health.
“You have to care for yourself, if you wish to care for others.”
Rob Simkins from Carers Wales explains that added costs and reduced income, being slow to realise you need help, plus a shortage of the right help for each family, can lead to crisis.
“Unpaid cares save the Welsh Government over £10 billion”
He wants to see Welsh Government and Councils make unpaid carers a priority and proactively seek them out to provide care.
“Unpaid carers are just as vital as our health and social care services.”
He urges people to reach out as there is some help available across Wales.
In Oct 2023 Cwm Taf UHB began to launch a revised Adferiad service. This followed the Welsh Government funding given to Health Boards to extend their long COVID services to also cater for people with ME/CFS and other post-viral conditions.
The Health Board has updated their website over the subsequent months and invited people to read it to find out about their service, the medical conditions it is there to help, and things to help yourself while you wait for a referral. We can now see what the Health Board is offering people in the areas of Bridgend, Merthyr Tydfil and Rhondda Cynon Taf.
Unfortunately, the website presents a confused mix of information and misinformation about ME and Long COVID, and leaves us with many questions. This overview is long but divided into the following sections:
The name: Primary Fatigue Service
Fatigue is commonly known as a symptom in many different kinds of medical conditions. The fatigue in ME/CFS is often called chronic or debilitating fatigue, but what is Primary Fatigue? The website defines it in both video and text:
“With primary fatigue the core symptom is exhaustion. The fatigue is not caused by another illness such as a respiratory or heart condition. This would be secondary fatigue”. [Video 1]
When the term Primary fatigue is used in neurological circles however it has the opposite meaning:
“Primary fatigue is directly related to your neurological condition i.e. stroke, multiple sclerosis, transverse myelitis, Parkinson’s disease. Secondary fatigue is linked to other factors that are not necessarily related to your condition… People describe fatigue as overwhelming tiredness or complete exhaustion. It is a symptom, not a condition” Living with fatigue | Brain & Spine Foundation
So, we are left wondering if the Primary Fstigue Service (PFS) view is that:
What is ME/CFS?
We are told that Long COVID, Post Viral Fatigue and ME/CFS all “have similar symptom patterns”.
For ME/CFS the website says that the most typical symptom “is debilitating fatigue. Other problems are Post Exertional Malaise or Post Exertional Symptom Exacerbation, unrefreshing sleep and cognitive difficulties.”
However, the NICE guideline says that all 4 symptoms mentioned above are necessary to give a diagnosis of ME/CFS. Fatigue is therefore no more or less ‘typical’ of ME/CFS than the other 3 symptoms. Instead of linking to the NICE guideline for the official definition of these symptoms they redefine each of them on the website.
For Long COVID the website says “the most common symptoms of long COVID are PEM/PESE, extreme fatigue, feeling short of breath, loss of smell and muscle aches.” They also say that “Long COVID is a type of post viral fatigue and ME/CFS could be.”
The NICE Guideline for “the long-term effects of COVID-19, often described as ‘long COVID’,” doesn’t specify which of a long list of possible symptoms might occur, simply that they “continue for more than 12 weeks and are not explained by an alternative diagnosis”. The implication is that this service is catering only for a subset of Long COVID patients with fatigue. It is unclear if groups with other post COVID symptoms are catered for.
The website says PVF happens “when the fatigue that started with a viral infection continues for a longer period of time after the infection has gone. Recovery after activity changes, and sleep may feel unrefreshing.”
A series of 3 videos (slides with voice-overs) are included to “help you understand dysregulation and how this contributes to the multiple symptoms in primary fatiguing conditions“. BACME publications are acknowledged as their source.
“Dysregulation means your body systems are not in balance. Current evidence suggests that dysregulation of multiple systems is the cause of primary fatigue.” though it does add:
“So what might be going wrong to cause the dysregulation? Some people may have an existing vulnerability such as a genetic predisposition or an underlying condition.”
Are they saying that although an underlying condition is not the cause of primary fatigue, it could trigger an imbalance between body systems, which is the cause of fatigue? Can you ‘balance’ many systems that are independantly not functioning correctly? If so, where is the evidence that this (and not the dysfunction in many body systems) is what has triggered ME/CFS and LC symptoms?]
“Balancing the body systems will achieve ‘homeostasis”.
The terms dysregulation and homeostatis are not new but they have been given a new slant here. Homeostasis in biology is where the body is controlled by body temperature, fluid balance, pH of extracellular fluid, the concentrations of sodium, potassium, and calcium ions, as well as the blood sugar levels. (Wikipedia)
The term dysregulation is most often applied to emotions: “an inability to flexibly respond to and manage emotional states.” (Wikipedia)
In immunology the term dysregulation means ” a breakdown or maladaptive change in molecular control of immune system process.” (Dictionary)
The website lists which generic symptoms are linked to specific body systems but nowhere mentions the specific dysfunction researchers have been finding in ME or LC bodies or discusses how that dysfunction triggers hard-to-treat symptoms.
Be aware that you need a diagnosis before approaching the Service.
The range of topics that NICE recommends should be included in a care and support plan:
Although the page on ME/CFS talks about ‘managing symptoms’ the videos talk about how to achieve homeostasis or balance.
ME and LC researchers are still unclear whether there is a single cause for all the dysfunction they have found in the body, and if one intervention could be a cure, but BACME and the Primary Fatigue Service appear to believe the clue is in the brain. One of the videos talks about using neuro plasticity to alter symptoms:
“The brain continually reorganizes itself by forming new connections throughout life so this is good news knowing the nervous system can change and the symptoms can change and reduce. All these symptoms interact telling each other to do more or less in health via feedback loops.”
Research is continuing to show that brain retraining can help people whose brains have been damaged by a stroke regain some of their lost speech, movement etc.
With the right techniques you might also be able to influence the brain’s gear system (locus coeruleus or blue dot) and improve your control over your cognition, creativity and mental wellbeing, but where is the evidence that it can improve severe symptoms and even heal people with ME and LC?
The treatment suggestions mentioned for ‘bringing the systems into balance’ include:
“improve body clock rhythms, eating at consistent times, improve your nutrition, drink 2 to 3 litres of water, get your natural body clock rest, support any orthostatic intolerance with simple things like activating your leg muscles wearing compression socks, mindful relaxation, decrease immune activation & inflammation triggers, remain within your energy envelope, breathing, pacing, reduce boom bust, turn down SNS turn up PNS.”
These would appear to all be strategies that in theory might help anyone, including people with ME and LC, improve their ability to function to some extent, but their effectiveness could be hampered by continuing physiological dysfunction. Has that been researched?
On the fatigue page, 3 videos cover the subjects of:
The aim given is to avoid worsening fatigue. Although the videos recognise that there are different types of activity (physical, emotional etc.) and suggest a number of useful strategies to recognise when you are overdoing it and how to pace, the videos fail to make it clear how activity affects all symptoms, not just fatigue.
According to video 2 Energy management involves the “4 Ps: Prioritising, Planning, Pacing and Pleasure“. Pacing means interspersing activity with rest and “a moderate Pace means moving at a rate that you can hold a conversation” (a dream out of reach for many!) Useful advice is given about journalling, rest, energy envelope etc. but this is said “to improve fatigue and the regulation of your nervous system”.
The pacing video also contains a lot of helpful advice, but fails to alert people to the probability that using too much energy will trigger a worsening of a number of symptoms (NICE 1.11.2), not just fatigue. It will not be possible to establish a helpful pacing plan if people cannot recognise that a worsening of balance, sleep, cognitive dysfunction or pain is also a sign they are overdoing it. Symptom management should be the goal, not just fatigue management.
‘Graded Activity Light’ is the subject of video 3: Moving forward. After 1 or 2 weeks of achieving a ‘stable baseline’ they advise you could, if you wished to, begin to increase activity by up to 10%! One of the slides suggests that the road to healing will have ups and downs and you shouldn’t give up, just slow down the increase in activity. They do not appear to tell patients about the benefits and harms of any treatment or management advice.
The NICE guideline advises against “any therapy based on physical activity or exercise as a cure for ME/CFS”. It does accept that some people might want to increase their activity but that a programme should not use “fixed incremental increases in physical activity”.
NICE advises that pwme should be:
WAMES knows of some people with ME who have gradually increased their activity and have seen their function improve, maybe even significantly, but this happens over many months or years, not weeks. Many have found that pacing has led to better function, helped symptoms from worsening and given them a better quality of life, but they are still living with those symptoms.
Some people unfortunately deteriorate, with no obvious explanation. Pacing and energy management is a tool for managing symptoms, not for healing them. Improvements in health can come from a number of different sources and should be celebrated, but will not necessarily work for everyone and cannot be guaranteed.
What about PEM/PESE?
Post Exertional Malaise is mentioned as a separate symptom. The website and videos fail to convey the all-encompassing effect of a process which distinguishes ME from other conditions that also contain fatigue. The term Post-exertional Symptom Exacerbation (PESE) which was introduced in the draft version of the NICE guideline describes this better.
Video 2 says: “Exercise intolerance is the decreased ability to do physical activity due to fatigue and slow recovery after activity.”
This use of the term exercise intolerance (EI) can apply to deconditioning, but PEM/PESE in ME/CFS and LC is a larger, more complex experience and shouldn’t be confused with simple EI.
According to ME/CFS research, exertion and sensory experiences don’t just trigger the worsening of symptoms but are accompanied by physiological changes, including altered gene expression, VAT reductions, decreased aerobic metabolism, altered cellular metabolism, neurobiological changes, dorsal midbrain activity post-exercise, mitochondrial disruption, etc.
A number of key doctors and scientists talk about the cardinal feature of ME as Postexertional neuroimmune exhaustion (PENE): a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.” Myalgic encephalomyelitis: International Consensus Criteria Table One
PEM is discussed at the end of video 2 and it is attributed to people with ‘primary fatigue’, but in fact not all people with fatigue, LC or PVF will experience this.
One of the aims of energy management is said to be breaking the ‘Boom bust cycle’ but researchers have been challenging that assumption that people with ME/CFS experience an overactivity/underactivity pattern or boom/bust cycle. Crashes and symptom flares occur even with a regular activity pattern and this is probably caused by illness pathology.
While budgeting energy can be helpful, it is important to avoid blaming patients if they have an activity peak that causes a crash. Avoiding patient blaming is the reason Long COVID physio say they do not use the term in their pacing video. Pacing
The fact that crashes can be delayed by a day or more, making it trickier for people to recognise which activities are problematic for them, is not mentioned. Nor that it is not always the type or amount of activity which triggers a crash, but can be a cumulation of many small amounts.
In conclusion
WAMES finds there are too many questions about the Primary Fatigue Service’s understanding of ME and LC. While much of what is covered might describe some people’s experience of fatigue and suggest helpful strategies for them, there appears to be a lack of understanding of the nature of ME/CFS, as defined in the NICE guideline and experienced by millions worldwide.
The therapists running the Service are all experienced in their fields and are keen to help, but if you decide to approach the Service, please be aware that all of the staff may not understand ME/CFS or the NICE guideline and could use words in a different way to you or others in the ME Community. Do some research into ME/CFS and PEM/PESE beforehand so you can assess the usefulness and limitations for you, of the information and strategies they suggest.
If you live in the Cwm Taf area PLEASE give us your experience of ME, healthcare, and what has helped or harmed you and what you want from an ME/CFS service. We would especially like to her from you if you have expereinced the Primary Fatigue Service. This will help us as we continue to engage with the Health Board.
Use the contact page, helpline or email jan@wames.org.uk
Following the English Delivery Plan Consultation in 2023 a commitment was made to produce Continuing Professional Development courses on ME/CFS.
Part 1 has been published and covers:
Chapter 1: What is ME/CFS?
Chapter 2: Causes of ME/CFS
Chapter 3: Symptoms of ME/CFS
Chapter 4: Managing ME/CFS
Chapter 5: Support and Information
The text can be viewed on the ME Association blog
2 more modules will be published later in 2024 and will be accessible to professionals through the ELF hub or Learning hub.
English researchers set out to find out how the increasing use of remote consultations in general practice affected people with CFS/ME and Fibromyalgia.
Whilst face-to-face consulting was seen as a ‘gold standard’ by many, previous negative encounters affected the experiences of remote consulations.
“The participants felt they needed to ‘prove’ symptoms within a medical system that did not bestow legitimacy on these diagnoses, highlighting a clear power imbalance and likely further contributing to negative experiences in remote spaces.
More positive experiences came from those who felt care was connected, either with a consistent clinician or by feeling that their illness experience was understood.
This was particularly relevant for those with co-morbid conditions viewed as related to their CFS/ME and Fibromyalgia; a ‘one consultation, one problem’ approach was felt to insufficiently capture this complexity.
The more informal use of remote consulting, particularly telephone, to ‘check in’ was seen positively. Feeling heard, valued, and believed was at the crux of every encounter whether conducted remotely or face-to-face.”
Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study,by Helen Leach, Abi Eccles, Carolyn A Chew-Graham and Helen Atherton in BJGP Open 27 Aug 2024; BJGPO.2024.0079 [doi.org/10.3399/BJGPO.2024.0079]
Background
Remote and digital consulting in primary care has rapidly expanded since March 2020. It is important to understand patient experiences, particularly for those living with complex long-term conditions, to identify how care can best be delivered, including within the remote space.
Aim
To explore the experiences of people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [CFS/ME] and Fibromyalgia when consulting remotely in primary care.
Design & setting Semi-structured interviews with patients living with CFS/ME and fibromyalgia in general practice in England
Method
Semi-structured interviews were carried out with 13 participants. The interviews were transcribed and analysed thematically according to a Foucauldian theoretical framework.
Results
All participants highlighted needing to feel believed by clinicians. Many reported difficulties with telephone and online consulting due to the lack of physical communication. Positive outcomes were reported when there was a good relationship with a clinician. Continuity in care and recognising the complexity of these conditions were also considered important.
Conclusion
This study allowed people living with CFS/ME and Fibromyalgia to describe their experiences when consulting remotely. Participants highlighted needing to feel listened to and felt they benefited from an ongoing relationship with a clinician although this was difficult to achieve when consulting remotely.
Some advantages of remoted consulting were reported, particularly when symptoms were troublesome. Flexible access systems with a range of consultation modalities or preferred clinician(s) availability could improve healthcare encounters, particularly given the increased use of remote consulting, in primary care.
We all want a decent quality of life for ourselves and those we care about. Yet two million Disabled people are trapped in deep poverty, unable to afford to eat or to heat their home.
Social security doesn’t cover the hidden or additional costs of disability – things like electricity to run vital equipment and appropriate transport to get out of your home. And too many workplaces are unwilling to employ Disabled people.
For people with ME/CFS there is an added lack of understanding about the fluctuating nature of the condition and the need to balance activity with rest to avoid PEM/PESE. Some even refuse to view ME/CFS as a long term physical condition which “has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities” – the definition of disability (Equality Act 2010)
That’s why WAMES is backing the UK-wide Campaign for Disability Justice, calling on Governments to work with organisations led by Disabled people to guarantee:
To support employers to create more accessible jobs and to ensure Disabled people have voluntary access to good quality employment support, without the threat of sanctions.
To guarantee a decent standard of living for Disabled people, in or out of work, that adequately accounts for the additional costs they face. Improve social security so that everyone can live a decent life, whether they’re in work or not.
To lead the way in building a society that respects and values Disabled people and supports the development of local Disabled People’s Organisations (DPOs).
This is a significant initiative to call for change, supported by UK organisations such as Scope, Mencap, Disability Rights UK and the Trussell Trust, as well as many regional and local organisations.
Please, ACT NOW and sign up to support the campaign. Don’t forget to spread the word to your friends and families.
Follow the campaign on X at @CampaignFDJ and sign up at https://www.campaignfordisabilityjustice.org.uk/sign_up_to_support
The WAMES helpline is run by volunteers and will be closed for the Bank Holiday long weekend.0290 2051 5061
closes 5pm 23rd August
reopens Tues 27th August
For emotional support, the Samaritans can be contacted 24 hours a day, 7 days a week.
English – 116 123 – free number (24 hours a day, 7 days a week)
Cymraeg – 0808 164 0123 – free number (7am -11pm, 7 days a week)
Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.
8am to midnight, 7 days a week
140+ people contributed to the project organised by #MEAction. This 17 minute long video is a compilation of photos, drawings, writing and videos submitted from aound the world.
#SevereME day
On #SevereMEday, 8 August 2024, WAMES is asking the NHS in Wales to ensure they can treat patients with ME, and particularly those with severe ME, appropriately and safely.
To highlight what this means, WAMES is sending the NHS and hospitals a copy of the WMEA Best practice guidelines, which can be used in conjuction with the NICE guidelines section 1.17: Care for people with severe or very severe ME/CFS
SAFEGUARD REST: and eliminate all non-essential interaction around the patient.
RESPECT REASONABLE ADJUSTMENTS: dark glasses, headphones or earplugs/ ear defenders, eye-masks, flat beds etc.Safer hospital care for Severe ME: information for health providers
See also: Hospital mistreatment of Severe ME patients globally #SevereMEday
This #SevereMEday, 8th August 2024, the World ME Alliance is highlighting the experiences of people with Severe ME in hospitals across the globe. People with ME everywhere experience stigma, denial of evidence-based science, disdain and dismissal of symptoms by healthcare providers. Yet for those with Severe ME requiring hospital care, the consequences may be fatal.
The grave dangers people with Severe ME are exposed to in hospital were underlined at the recent coroner’s inquest in the UK for Maeve Boothby O’Neill. Maeve, a 27 year old woman with Severe ME and resultant malnourishment, died in Oct 2021 following 3 hospital admissions where denial of emergency nutritional care led to her terminal decline.
Sadly, the mistreatment endured by Maeve Boothby O’Neill is far from rare. Carla Noaum, aged 23, diagnosed with ME over 8 years ago, has been battling to get appropriate care at West Middlesex Hospital in the UK since her admission in March 2024. Carla’s weight has dropped from 52kg to 35kg and she is suffering extreme digestive pain from a nasogastric feeding tube, yet a psychiatrist stopped her pain medication and insisted on exposing her to light. The BBC reported her father as saying she was “screaming from pain” and repeatedly losing consciousness over nine days as a result.
This pattern of neglect and harm is being repeated around the world. Severe ME patient Alicia Pallenchier from France recalls: “The last time I went to the hospital, I was deteriorating fast. They refused to admit me to the hospital where I live because they said I should just lose weight and see a psychiatrist. So I had to go 150 km away from home.
“At the beginning, I called them several times to take me to the bathroom, put on my pyjamas, or do things I could no longer do by myself. They opened the shutters and windows, even though I couldn’t stand the light. I was told that I shouldn’t do less in the hospital than I did at home. I told them that at home, I was dependent on my mother for almost everything.
“They offered me a shower every day because they didn’t understand that I wasn’t capable of having more than one shower a week. I had to ask for a nurse to bathe me but she didn’t understand as I am young.
“Almost no one came to help me. They never brought me the commode, even though I asked repeatedly. I had to get up several times a day to go pee, and I fell a few times. The meat was too hard to eat, but they didn’t offer to cut it. They even criticised me for my choice of breakfast because I can’t digest coffee or tea.
“They managed to lose my pill organiser on the first day. Missing the pill to stop menstruation was enough to trigger my period at the end of the week. They only offered me diapers. I left the hospital in an even more exhausted and compromised state than before.”
An anonymous patient in Greece reports: “Despite my Severe ME symptoms, hospital staff dismissed my condition as psychosomatic. They forced me through harmful tests and physical activities even when I couldn’t speak due to severe PEM.
“The staff mocked me and failed to provide appropriate care. I couldn’t eat their food because of severe MCAS so I was having to choose between constant reactions or not eating, and they exposed me to intense odours despite my extreme sensitivity. They refused to read relevant scientific literature on ME and their insistence that I was “overreacting” and that “it’s all in my head” contributed to an increase in abuse from my family.
“The Greek health system caused my condition to worsen, leaving me in a state of living death.”
Another anonymous patient summarised her experience of hospital in Pakistan: “No protection was offered against lights or sound. No pillows were given. Disability accommodations were forcefully taken away. I wasn’t allowed to use my collar (to support vertebrae compromised by EDS and CCI) or HR-monitoring watch. My IV fluids and pulse oximeter were removed. They told me to stop coming to the ER or I’ll be sent to the psych ward. They also made fun of me for trying to involve international ME doctors. I wouldn’t go to the ER again unless I was shot or in a car accident.”
Rachel Caroline from Norway states: “I am refused help. They say as long as I am not fatally sick, they won’t admit me to the hospital. It doesn’t matter if I am screaming in pain or unable to eat. Norway does not believe in energy-limiting conditions. Doctors say it’s just in my head, and I need to think myself healthy. I have no mental illness but still they just sent me home.
“I’m getting sicker every week. I scream with pain for 2 hours every day. I have stopped eating now. My poop is white. My urine is brown. There is often blood in my poop. And 40 other symptoms.”
“I’m not dying because of ME or Long Covid, I’m dying because the doctors are killing me by not investigating or helping me.”
Beyond medical neglect and gaslighting, hospital mistreatment that harms people with Severe ME to a life-threatening degree can amount to inhuman and degrading treatment.
The World ME Alliance hopes that the findings of Maeve Boothby O’Neill’s inquest will catalyse change for Severe ME patients globally.
Hospital care for Severe ME will always be challenging, but there are simple steps that can be taken to safeguard vulnerable patients and improve their experiences.
Learn about what safe hospital care should look like for people with Severe ME.
create global change by engaging the World Health Organisation’s support in designing and delivering services for ME
