Cwm Taf Primary Fatigue Service

 

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
• What is ME/CFS?
• What is Post Viral Fatigue?
• What does the service offer?
• What management advice is given?
• Energy management & pacing
• What about PEM/PESE?
• In conclusion
• What do you think and need?

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:

• Primary Fatigue is a separate condition, with exhaustion as its main symptom OR
• the service is for anyone with the symptom of fatigue that is not caused by a major medical condition
• therefore maybe ME/CFS and Long COVID are not considered to be major illnesses, but simply two expressions of the symptom of fatigue?

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.

What is Post-viral fatigue (PVF)?

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.

What does the service offer?

• “general advice about how to manage symptoms is on the website“
• “if you need more help, request a referral from a health care professional – this will require tests to rule out other causes for the symptoms“
• “you will be offered an assessment… with a therapist at a clinic, on the phone or at your home“
• “they will work out a ‘condition management plan’ with you“
• “the management plan might include one-to-one support with one or more of the therapists“, or attendance at “the CAMAU group programme“.
• “The CAMAU programme is offered online or at community venues and “supports people to understand and manage multiple symptoms, to find a baseline and to learn about planning, pacing and prioritising activity.”

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:

• information and support needs;
• support for activities of daily living;
• mobility and daily living aids and adaptations to increase or maintain independence education, training or employment support needs; self-management strategies, including energy management;
• physical functioning and mobility;
• managing ME/CFS and symptom management, including medicines management, for all severelity levels;
• guidance on managing flare-ups and relapses;
• details of the health and social care professionals involved in the person’s care, and who to contact
• information on the benefits and harms of any intervention

What management advice is given?

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?

Energy management & pacing

On the fatigue page, 3 videos cover the subjects of:

• Finding a Stable Baseline
• How To Manage Your Energy
• Moving Forward

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:

• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it
• making flexible adjustments to their physical activity (up or down as needed)…
• advised it is a long-term approach − it can take weeks, months or sometimes even years to reach stabilisation or to increase tolerance or activity.

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.

What do YOU think and need?

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