The current proposed interim delivery plan for ME/CFS (https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan) is lacking in details and useful actions to talk about the exact text because the severity of the situation isn’t accurately portrayed. What I want to talk about is the reality I and other sufferers I talk to face in reality and the realistic actions government needs to take to correct it.

Please forgive the spelling and grammar mistakes I make. The consequences of writing this will be severe and potentially permanently damaging to me and its hard to concentrate with such neurological problems. But as a severe ME patient I can not just limit my response to the boxes you provided and get what I need form the DHSC.

Research

Reality of the situation

The current situation is that the UK government has funded thousands of CBT/GET and Obesity studies with ME/CFS funding over multiple decades including after the NICE guidelines were released. This research has universally been of poor quality, some of it funded to millions and applied throughout the western world. Research is almost entirely done by Psychologists and physiotherapists. It is dominated by the wrong profession.

The research landscape based on biology in the UK is very small, not funded by the UK government except in one specific case with DecodeME. Diagnosis is so poor within the NHS that DecodeME has struggled to reach its 25,000 DNA samples target which has slowed the project considerably. There is no register of ME/CFS patients and no national count of patients by the NHS.

While its fair to say prevalence of ME/CFS was ~241,000 this ignores the enormous growth in the condition due to Covid. With nearly half of all Long Covid sufferers also meeting criteria for ME/CFS they should not be ignored and represent an estimated further 1 million patients based on the ONS studies and its growing every week.

The level of action necessary

Research needs to be progressed on three fronts simultaneously.

1. We need symptom relief trials for a variety of drugs known to help such as Naltrexone and Ablify. There are roughly 20 such drug trials ME/CFS researchers could tell you to start immediately that if given proper funding have potential to help patients in the short term manage some of the symptoms.
2. We need validation studies on the various potential biomarkers that have been found over the past 70 years. While none of them is ideal as a marker for drug research they would be extremely useful collectively for diagnosis combined with the symptoms. The Chalder fatigue questionnaire approach is long ago obsolete and minimising and should be scrapped, we have blood tests now that produce different results and we should use them.
3. The underlying cause of the disease from the various odd blood and other results in the disease need to be chased upwards to root cause. Covid and Long Covid are an opportunity that has been squandered where the disease process can be caught early with a known viral agent as the cause. The right type of research looking at the first things to happen in the body could inform the root cause much easier than a 10 year sufferer who has a range of downstream consequences.

The DHSC should not hand over control of this to NIHR, MRC and CSO. All these intuitions have acted against ME/CFS patients interests like most of the NHS and its public bodies. They contain people in key positions that have used their position it to undermine research and sent it into the Psychology direction for decades. They do not put any power into the patients hands and frankly I don’t trust them and anyone that understood the extent of what they are doing wouldn’t either.

All this requires money, it should given the severity of the disease and its historical underfunding receive a commitment in the billions for years to come if the government is serious.

Training

Reality of the situation

Contrary to the statements in the consultation most Doctors receive training on ME/CFS. The problem is its listed alongside Munchausen syndrome as a Psychological disease. As such the basic problem is to undo that wrongful training, ensure it is changed in the existing training materials and correct understanding in the entire NHS.

After the NICE guidelines were rolled out the Royal Colleges signed an open letter against the guidelines and have consistently breached them ever since with patients. Since then they have re-enforced this position with position papers in the British Medical Journal and then patient advocate letters as response were removed there is a clear problem of intentional obstruction including within the BMJ. The problem is not just of wrongful training and a lack of awareness there is a quite large group who are intentional refusing to comply with the guidance and continuing to harm patients.

I and many other ME/CFS patients have complained to the NHS complaints system including the General Medical council and found the same bigotry and abuse, even after the NICE guidelines were released. As such the existing complaints system has the same problem as the NHS as a whole, it can not be trusted to enforce the NHS charter on staff that refuse to change their ways.

We can’t underplay how bad the situation with healthcare is with ME/CFS. People can’t get diagnosed and doctors will not believe any of their symptoms. The consequence is they receive no healthcare, directly in breach of the law and NHS charter. Training will have to go far beyond the NICE guidelines to get anything but diagnosis done as details of potentially helpful symptom relief treatments.

The level of action necessary

Three things need to happen

1. The training on ME/CFS needs to be mandatory for all NHS staff. It should also be done by all social workers that will work with ME/CFS. We ought to have the expectation in the next year our GP and doctors know how our disease works and treat us appropriately.
2. There needs to be a special complaint system and protection mechanisms for ME/CFS patients. The level of abuse we receive and the current problems with the complaints system mean entirely parallel public intuitions will be required for some time to deal correctly with manslaughter, harm and abuse.
3. There needs to be disciplinary action attached to the above complaints system but especially to those that signed the Open letter against the Guidance. Those individuals should have no place in our NHS ever again and their medical licenses should be revoked. You can not have those individuals near a patient ever again they have a history of significant harm based on fraudulent research.
4. Doctors once they understand the disease need to be free to treat symptoms and use drugs based on international research that hasn’t reached NICE levels of efficacy.
5. We need far more than training. The entire paradigm of treatment has to change for PEM/PESE sufferers such that patients no longer risk worsening their condition when seeking treatment in the NHS. We can not go to our doctors they have to come to us and they need to understand many of us are immune compromised and infections are a significant danger to us.

Societies attitudes

Reality of the situation

The news, government and doctors have been calling ME/CFS patients malingers, useless eaters and recently a social contagion and before that hysterical. Such a massive campaign of abusive language is where this stigma comes from and is currently repeated by government ministers and MPs as well as Doctors on social media. This trickles down to society at large.

The consequence is one of violence on the streets against people with all forms of disabilities. People spitting in the faces of ME patients wearing masks due to their damage immune systems. Families are being destroyed by a massive misinformation campaigns that have spanned 80 years of state funded abuse and propaganda.

The level of action required.

1. This will require campaigns larger than AIDs, smoking and drunk driving to correct societies attitudes to ME and other chronically ill people and their conditions.
2. Government rhetoric and abusive language towards the disabled needs to be stopped and result in their dismissal as an MP as significant breach of the ministerial code. Such dehumanising leads no where good.
3. Effort needs to be applied to find the Doctors who are using social media to speak abusively about ME/CFS patients and ensure disciplinary procedures are applied.

Welfare

Reality of the situation

ME/CFS is a very expensive disease especially at its most severe. People will require daily social care and significant drug intake to reduce their suffering. PIP doesn’t come close to covering the additional costs that sufferers accrue especially since the NHS provides nothing. Patients are having to pursue private healthcare to diagnose themselves even for conditions that Doctors would diagnose in other patients. NHS diagnosis and treatment is denied to ME patients.

The way the DWP is setup currently is intentionally cruel. It assumes ME is a temporary condition, they ignore evidence from patients and require us to use legal mechanisms to obtain rightful payments. The press has covered enough about how broken the DWP is and unfit for purpose the system is, its designed to be intentionally cruel and abusive.

Work for the disabled is a constant problem, once disabled companies wont interview you, don’t hire you and find ways to fire you. This is already known and large correcting actions are required and have been required for decades.

The level of action required.

1. The DWP needs fixing. Welfare payments are insufficient for people so incredibly disabled and with no NHS care.
2. For those that can work and the disabled generally we need a Labour board somewhat like the USA where people can take complaints and have significant fines levied against companies. ME patients simply don’t have the energy to be attending courts to enforce the law.

Severity

ME/CFS is at its worst as disabling as the final days of Cancer for a terminal patient. Its also for life. The basic expectation of children attending normal schools and going to college or ME patient getting some accommodations to go to work and trundle off to clinics 50 miles from their home do not match the reality. A person in a darkened room in bed for almost the entire day suffering from the slightest light and sound is not going to be needing just a few days off, they are permanently and severely disabled and there no jobs you can do with a mask and noise cancelling headphones avoiding trying to think while in bed. This disease is exceptionally painful, the migraines alone can cause blindness, deafness and severe torture for years without relief. The version of reality where minor tweaks can bring patients back into the workforce or schools and healthcare will fix them right up where no treatments exist let alone understanding of the condition is completely delusional.

You now face the situation where one in ten infections of Covid are leading to Long Covid, half of which is leading to ME/CFS. In the past 3 years ME/CFS prevalence has quadrupled and those unable to work has gone up by 500,000. This situation does not get better until the level of research funding meets the reality of the challenge of this condition. This consultation while a minor step in the right direction has minimised the severity of the condition, the abuse its sufferers endure and the enormous growing problem of Long Covid ME/CFS. I hope to see better after this draft that matches the reality I have lived in and it needs to be matched by funding and actions appropriate to the reality of the situation. Do better please.