Relevant & Core Issues in ME/CFS & Long Covid in Research, Care & Culture.

Part Two

9.   Funding Issues in the UK

Yet it seems because of the lack of connection or awareness of the issues in ME funding lessons have not been learned. In the 2 funding schemes the NIHR released £38.1 million into Long Covid, only 4.53% is going into solely biomedical, diagnostic research -total of £1.7 million in small 3 studies. Without actually understanding the disease and being able to develop a diagnostic marker we can’t develop effective treatment. Once you have the golden 3: cause, underlying disease mechanism and treatment everything else being funded changes. The key is people need research that makes a difference in there everyday lives. I ask this question about research to Independant Sage (45min 11sec in)

There is little communication or collaboration in the UK or Internationally with ME researchers Another issue is that we have members of the BPS trying to move into the field of Long Covid to influence the research as they have influence on funding committees, clinics (Michael Sharpe at Oxford), in the press (Michael Sharpe, Paul Garner, Richard Dingwall) and on the JVIC (Richard Dingwall – although now he has left).

We have 3 research projects in the UK for ME: DECODEME, the biggest study in the UK analysing the genes and genome of ME patients; FMT at the Quadram Institute looking at Gut Dysbiosis and the Microbiome & a possible diagnostic test that can’t get funded at the Morton Group in Oxford University. Who have done a successful preparatory study in Ramen Microspectroscopy that can be developed into a simple blood test. They have applied for funding to compare Long Covid and ME but turned down and rely on private donations. None of the Long Covid funding is building on the ground of the privately funded post-acute viral research in this country.

Another issue of funding is the Long Covid clinics – it is a step in the right direction we need specialist care but the problem is they can’t offer any actual treatment or tests, they can listen and believe you (hopefully) which is a start – but usually they can only offer superficial advice on pacing and breathing exercises and to check your not going to kill yourself. There is a gap in knowledge in that the public see all of these millions of pounds going into the clinics but then when you get there they aren’t much use. This can be another source of patient frustration as you think you are getting medical care but then they dismiss you after one appointment and you are left on your own again.

10. Isolation & Alienation

Image credit: Chris Wildgoose

The physical, cognitive & sensory fatigue that comes with ME/LC means that socialisation & basic tasks can be difficult. There is a total breakdown of the world and identity as a sufferer knows it – work, family, activity, hobbies etc. Family and friends often drift away as you can’t keep up and people don’t know how to relate to the chronically ill at times, we have no training or education in this important skill. This is intensified as it is an invisible illness and because the medical profession don’t understand it and people can’t relate to it so people often don’t believe you or don’t understand how bad it is. There is no therapy or secondary supportive therapy/support to deal with this – leading to more isolation and stigma.

11. Misunderstanding and Under-estimation of the Condition

Due to the lack of medical training and literature/support given to the patient this trickles down to the public who can’t relate to the many unseen symptoms or understand the intensity of the condition. This is exacerbated in that it is cyclical at times so the patient may be able to do some light activity one day but then not the next or a person digs into their energy reserves to be able to participate or make around them feel better and then what is not seen is the crash and the days in bed after.

“It’s like having glandular fever, taking your glandular fever on an all-night drinking binge, then taking your glandular fever and your hangover and doing a 30km forced march over the Brecon Beacons. The way you would feel at the end of that is how it feels to have M.E. every day. It is like being on a carousel: you have ups and downs but you can never get off.”

“I feel like I wake up with a mattress on me most mornings. When I wake up with post-exertional malaise, there is an elephant sitting on the mattress. He stays there for days. He steals my words and fills my brain with wet cotton wool and wraps his trunk around my neck, so I struggle to swallow.”

A practical way to explain fatigue is spoon theory: give someone 5 spoons and say this is your energy quota for the day and tell them how many spoons each task takes (this can vary from person to person. So 1 spoon is having a bath, 2 spoons a shower, 4 spoons making dinner, 8 spoons going on a walk, 2 spoons watching a TV program, 8 spoons going out and socialising. This is the problem most people don’t think of themselves as using most of their days energy for everyday or nonphysical tasks. If you are in a flare too you can have 0 spoons to choose from.

12. Lack of Sufficient Vocabulary/Language/ Terminology

The point above is enhanced as ME/CFS uses non-anatomical and non-medical terminology to describe the condition – words associated with it are fatigue, fog, foggy, malaise, PEM, chronic, fuzzy, tired. The issue here is that most people experience these and think they understand them in relation to ME/LC – yet they really don’t describe them in enough intensity for people to engage with the reality of these conditions. This leads to more misunderstanding and alienation. If we use some of the more recent terminology found in biomedical research then maybe this sounds very different: glycosis; brain damage; vascular imflammation; less cerebral perfusion; neuroinflammation; T-cell Exhaustion; nitrosative stress; Immunologic abnormalities; small heart; white matter abnormalities; hypoperfusion; lesions; virus infecting astrocytes in the brain.

13. ‘Normal Test’ Problem

Komaroff has written an excellent paper on the in July 2021 ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied’ We see this in both communities the standard array of diagnostic testing is fairly limited even to what is sometimes available yet when tested the results come back as ‘normal’. Instead of saying well we might not have the right tests or offering a wider array of tests to keep investigating the process stops here. The patient is then often seen as not ill and ‘normal’ and dismissed with no other medical care. This is known as medical gaslighting. The importance of the patients testimony is important and needs to be believed, reported and further care given. This has a knock effect to society, friends and family who then also see the patient as normal. This is amounts to a double blow of patient harm, once by the illness and the second of not being believed – aka testimonial and epistemic injustice.

14.  Wider and more In-depth Array of Diagnostic Testing

Every post-acute viral patient should be given a much vaster array of tests as it is a complex multisystem illness. Some are cheap and easy to do or in the lab test array such as the: table tip test for POTS; the NASA 10 minute lean test; better B12 and Iron testing; more extensive electrolyte, vitamin & mineral tests as LC/ME strips and alters biochemical pathways such as the Tryptophan pathway; EBV Reactivation; hydroxylysine; hydroxyproline; MMP5; a more extensive cytokine panel[19]; microbiome testing; hyperpolarised xenon MRI. Then there are the tests that have shown very promising preliminary results but have been stuck due to lack of testing; Ron Davis Nanoneedle; Redox Imbalance testing; Ramen Microspectroscopy. It is also possible that patients will need a diagnostic tunnel approach as different body systems can be effected in different patients.
This is turn will help the hermeneutic justice of the patient giving them a framework to account for ME/LC and helps them to make sense of the disease. This in turn gives their patient testimony more weight and they are more likely to be believed. It stops “the computer says No” conundrum.

15. Medical Misogyny

ME, Lyme, Fibromyalgia, Autoimmune and Long Covid as well as other autoimmune conditions that post-acute viral illness are connected to predominantly effect women. Why this is is unknown at the moment although research is starting to be done.

The historical pattern of this paradigm is hysteria. Women’s pain is often more likely to be classified as emotional or psychological in origin and require emotional or psychological treatment. This is investigated in depth in Gabrielle Jackson’s ‘Pain and Prejudice: A call to arms for Women and their Bodies’ and in Elinor Cleghorns book ‘Unwell Women: Myth and Misdiagnosis in a Man-made world’
Early onset Parkinson’s in women is still more likely to be classed as ‘emotional’. MS before the physical disease origin was discovered was also seen as an onset of hysteria.

The medical world does not tend to use the word hysteria now, the terminology has changed to ‘emotional’, ‘psychological’ ‘based in the neurological system, ‘overactive amygdala’, ‘sympathetic nervous system arousal’, or ‘stress’. Because the lack of diagnostic or pathophysiology mainly due to a lack of funding LC/ME are often dismissed in women as being psychological and anxiety in nature, usually because the system effected is the autonomic nervous system which can mirror anxiety symptoms. The most common treatment in GP surgeries for ME is antidepressants at 84% regardless of the studies showing their ineffectiveness at treating the disease. This creates a delay in diagnosis and much patient distress.

16 Both conditions get Abelist & Insensitive Questions – Toxic Positivity.

There are a range of questions and comments that people receive from family and friends and doctors that are damaging to the persons esteem and wellbeing. It is a triple patient chain of injury and harm 1) Having a debilitating illness 2) Being Medically dismissed 3) Receiving misinformed and prejudicial questions and comments.

Some example of these include; “You look well”; “ The Doctor says there’s nothing wrong”; “are you better yet?”; “its anxiety”; “are you depressed?”; “Just try harder”; “try some exercise”; “be positive and you will get better”; “everyone gets tired”; “try to lose weight and do some yoga”; “your too young for that”; “what doesn’t kill you makes you stronger”; “everything happens for a reason”. We generally don’t have the training to talk to people with chronic illness even though at some point in our lives ourselves or someone close to us will be affected. What can be much more effective is giving the person validation and learning that offers of help, small acts of communication like a text message, photo and being aware of the persons limits. We can ask them:   Do you have enough spoons for that today?  How is your battery level today?  What level is your pain at today? How are you managing? Asking about something other than illness. Ask if they would like help with research or going along on medical appointments or to Join us for disease awareness events. Donate to charity in our honour. Take the bins out. Send some jokes. Gentle and compassionate friendship is very important even if we can’t socialise for hours, small gestures matter to stop the isolation of your loved one.

CONCLUSION – What do we need to move forward?

     Mixed-Cohort Studies – with LC and ME/CFS patients

    Education in Medical School

  LC Researchers to Collaborate with ME Researchers Internationally

Extensive Public Biomedical Funding for both conditions

Diagnostic Testing

Collective Research in a wide range of related condition

Better range of available diagnostic testing

Follow up Care – 1-point care

Financial security – protection in the Disabilities Equality ACT

  Telemedicine

Better patient and public education through the media

Change in terminology

Culture change and paradigm shift

Not to include Psychiatrists and Psychologists inappropriately

Coordinated Research Agenda

Break the cycle of epistemic injustice

Effective Treatment

Validation

International Foundation or Organisation to lead

Long Covid to be a part of informing Government Policy

Long Covid register, dashboard which is published