The whitewashing of ME just continued. Long Covid patients could be next.

Coronavirus, ME and the NICE logo
Steve Topple

THIS JOURNALIST’S PARTNER LIVES WITH SEVERAL OF THE ILLNESSES MENTIONED IN THIS ARTICLE. ONE OF THE DOCTORS MENTIONED IS ALSO THEIR FAMILY GP.

The coronavirus (Covid-19) pandemic has left some people living with so-called “long Covid“. Updated official guidance for another, extremely similar illness has shone a light into future treatment for these coronavirus “long-haulers“. It looks worrying, and like a whitewashing; one that has implications for both groups of patients.

Myalgic encephalomyelitis

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. The latest research says it affects at least 65 million people worldwide and around 250,000 people in the UK. But the numbers could be underestimates. Some research puts the number of undiagnosed ME cases at 80%. Meanwhile, other studies show a prevalence rate in the population between 0.2% and 3.48%.

ME is also sometimes referred to as chronic fatigue syndrome (CFS) or ME/CFS. Some people believe the two conditions are different. There is debate about the definition, though, with it also being referred to as post-viral fatigue syndrome. In this article, it’s referred to as ME unless otherwise stated.

Medical professionals generally claim there is no known cure. Some doctors have managed to get patients better. Yet only around 6% of people with ME have remission from the disease. But the cause of it is often clear. Because in around 50% of cases, people get ME following a viral infection. It’s almost as if the virus never leaves them. Some studies have shown people with ME have a constant, increased immune system response. It’s like the person’s body thinks it’s constantly fighting a virus which isn’t there.

Updated guidance

On 10 November, the National Institute for Health and Care Excellence (NICE) published its new draft guidance for the treatment of ME. There’s some progress which should be noted. Not least is the use of patient-led language; the recognition that too often parents of children with ME are accused of abuse or neglect, and that some patients may have:

experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness

But what stood out is NICE’s removal of a treatment called graded exercise therapy (GET).

Graded exercise therapy

The NHS website says:

Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity.

It usually involves exercise that raises your heart rate…

GET should only be carried out with the help of a trained specialist with experience of treating CFS/ME and, if possible, it should be offered on a one-to-one basis.

After finding out what you can already do comfortably, the length of time you exercise and the intensity will gradually be increased.

As part of your exercise programme, you and your therapist will set goals, such as walking to the shops or doing some gardening. It may take weeks, months or even years for you to achieve these goals, but it’s important not to try to do too much too soon.

‘Scientific fraud’?

GET has been marred by controversy. It was based on the PACE trial. This was a clinical study into ME that the Lancet published in 2011. Its findings into GET and cognitive behavioural therapy (CBT) as treatment for ME have been widely disputed. One prominent ME doctor called it “scientific and financial fraud”. An MP said it was potentially one of the “biggest medical scandals of the 21st century”. Some of the trial’s authors had conflicts of interest with private insurance companies. The UK social security body the Department for Work and Pensions (DWP) part-funded the trial. This led the MP to say:

One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.

Its original authors disagree with the criticisms. But along with the scientific evidence, many patients say that GET and CBT did not help them. Some say it made them worse. In 2017, the US Center for Disease Control (CDC) removed CBT and GET as recommended treatments.

GET gone…?

After pressure from patient groups and advocates, NICE has removed GET as a treatment for ME. It specifically states:

Do not offer people with ME/CFS… any therapy based on physical activity or exercise as a treatment or cure for ME/CFS… generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses… any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy

CBT is still in there. NICE says [pdf, p34] it should be used only to “support” people with “managing their symptoms”. It also says patients can use CBT to “reduce the psychological distress associated with having a chronic illness”. So, the media and ME patient groups have hailed this as progress. Yet sadly, the NICE draft guidance is not all that it seems.

All is not what it seems

It goes on to say that treatment providers should:

Only consider a physical activity programme for people with ME/CFS who are ready to progress their physical activity beyond their current activities of daily living, or would like to incorporate physical activity into the management of their ME/CFS.

In other words, doctors should only offer this if the patient wants it. NICE then states any programme should:

  • be “personalised”.
  • start at a “baseline level that does not worsen their symptoms”.
  • be based on ensuring the patient can “maintain it successfully before attempting to increase physical ability”.

But crucially, it should also use:

flexible increments for people who want to focus on improving their physical abilities while remaining within their energy envelope

In layman’s terms, this is not very different to the NHS definition of GET. And herein lies the problem.

A no-win situation

Apart from dealing with specific symptoms, the guidance offers little in the way of treatment. This is except for physical therapy and CBT.

So, NICE has left patients in a no-win situation. Firstly, they don’t have any choices over potential treatment. Secondly, the guidance places the emphasis of the management of their health onto them. As it states:

the person with ME/CFS is in charge of the aims of their management plan.

But when a doctor says by default: ‘well, we can offer you a physical treatment programme’, what choice do patients have? Either they say ‘no’, and have symptom management and contentious CBT. Or they accept the physical therapy. Who wouldn’t jump at the chance to get better if they were chronically ill and disabled and offered a treatment? Moreover, most patients are not medical professionals. So, they will trust their doctor’s advice.

The guidance also says doctors should refer patients to ME specialist teams. While these do exist in England, they are all varied. Some are led by psychologists like Surrey and Hull; others like the Yorkshire Fatigue Clinic involve immunologists. Moreover, others like in Suffolk have been stopped. So, the idea that people can see specialists is a postcode lottery.

It’s unlikely people will get better using physical activity. CBT has also been debunked by some as ineffective for ME.

The usual suspects

Meanwhile, the response from some of the people involved in PACE trial is also telling. For example, professor of psychological medicine Michael Sharpe was the principal investigator for PACE trial. Reacting to the NICE guidelines, he said of GET and CBT:

It is to be hoped that these new guidelines improve the quality of delivery of these treatments.

Psychiatrist Simon Wessely was also involved in PACE trial. He said:

In the new guidelines NICE has again emphasised that these approaches should not be fixed or set in stone, which is already the case for those few centres with proper supervision and expert leadership that do provide such services at present. Such services will agree that ‘unstructured exercise that is not part of a supervised programme’ should be avoided.

Other PACE trial authors were less happy with NICE’s guidelines. But the fact that two of the trial’s main people are reacting positively should be cause for concern. Because it confirms that, while on paper NICE may have removed GET, it has still left wriggle room for doctors to use exercise therapy.

‘Improving lives’. But for whom?

But the whole idea of exercise and talking therapies as a way to deal with chronic illness has gained traction recently; not least from the UK government and NHS themselves.

For example, the hereditary, genetic illness Ehlers-Danlos syndrome (EDS) has among its treatments CBT and exercise therapy. So does fibromyalgia. People living with medically unexplained symptoms (MUS) also fall under exercise therapy and CBT. Lots of chronic pain conditions also have CBT listed as a treatment, as do musculoskeletal conditions. The common theme with most of these illnesses (and ME) is that there is no recognised cure. So, the NHS lumps everyone in together and offers exercise and CBT. There are reasons for this.

For me, the story of why exercise and CBT is pushed onto people who are chronically ill is two-fold. Firstly, as I have repeatedly written for The Canary, it’s part of a drive by successive governments to use the NHS to force as many sick and disabled people back to work as possible. PACE trial, GET, CBT, and the idea that if those methods fail the patient isn’t trying hard enough, fits into this. The DWP and doctors can say ‘It’s your fault you’re still ill; therefore we won’t support you any more’. Peak corporate capitalism, you could say. Also, CBT is relatively cheap to deliver – so it’s a win-win in the age of austerity.

But as well as this, there is the “psychologisation” of physical illness.

The ‘psych lobby’

This idea has been around for many years. Essentially, psychologisation means that when a doctor can’t find a physical cause for a person’s illness, then it must be psychiatric. That is, the person’s mental health is causing a physical illness; ‘psychosomatic‘ or, it is ‘all in their heads’. As Dr Thomas English summed up:

Lupus, multiple sclerosis, AIDS, and Lyme disease suffered similar fates before ’tissue evidence’ was available. Patients were belittled by armchair speculators masquerading as scientists. Who among us believes this was helpful? A simple ‘I don’t know’ would have been better than specious speculation.

The authors confuse absence of evidence with evidence of absence. They are not the same. Absence of evidence may reflect insufficient research, inadequate technology, poor methods, flawed paradigms, closed minds, or lack of clinical experience; for example, in 1980, there was no clear evidence that AIDS was viral – blood products were considered ‘safe’.

For me, this is too complimentary about the role of psychiatrists in this issue. One leading immunologist, who is also an expert in ME, told me this psychologisation is due to the “psych lobby’s” influence. People like Wessely, who push narratives that ME can be cured or alleviated by things like CBT, are at the heart of the establishment. Colleagues like Sharpe have ties to the corporate insurance industry; not least through previous paid consultancy work for insurance companies.

Politicised health

English concluded:

The chronic fatigue syndrome [ME] and fibromyalgia (probably the same disorder) are characterized by considerable suffering and disability. We must not add to that suffering by trivializing patients with ‘functional’ [psychosomatic] labels.

But ultimately, ME, GET, CBT, and the NICE guidance are not just health issues. They are political ones: a perfect storm of money-saving from government, the system needing as many people to work as possible and psychiatrists making a healthy living off the back of all of this.

But there is now an emerging group of patients also facing the threat of the same treatment as people with ME. And they’re people living with long Covid.

Long Covid: the new frontier

We are already seeing the treatments the NHS is rolling out for these patients. It includes, of course, talking therapy (like CBT) and “strengthening exercises“. Not to put to fine a point on it, but here we go again. In short, long Covid is potentially looking the same as ME. It’s onset is similar (after a virus), as are the symptoms. So, in all likelihood giving people exercise therapy and CBT could have the same effect. That is, they may not improve the health of long Covid patients. Or, they could them worse. Long Covid patients may get a similar whitewashing of their illness as people with ME historically have.

The draft NICE guidance will do little for ME patients. In fact, it may manifest that not a lot has actually changed. It’s not good to see that patient groups have largely welcomed the guidelines without proper analysis or understanding of what’s really going on here. Sadly, too many people fail to recognise ME as a political issue, not just a health one.

But moreover, due to coronavirus, there are now countless more people at risk of falling foul to treatment that is grounded in wealth, not health. Any support of the NICE guidance will only add to the suffering of many, many people. It is now up to patients to demand that NICE changes its course – before the draft guidance is finalised.

Featured image via Willgard – pixabay and NICE – screengrab 

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  • Show Comments
    1. All to familiar with my partner having had Fibromyalgia for 8 years. This government unlike any that has gone before is prepared to let poor, sick and disabled people die prematurely through their lack of interest, care and provision. It diminishes our society massively and goes hand in hand with populism and a crude capitalism. No amount of words can make up for the scale of suffering going on.

    2. Yes, cast aside by a husband after 25yrs only made the illness worse. So benefits keep me in Poverty for the rest of my life. My benefit income has been systematically reduced since 2015. My basic Gluten Free food on prescription was removed, except bread in 2018. Now searching for suitable foods takes time and effort. I have to scratch cook everything, more effort. As as result of Coeliac Disease I have now early on set Osteoporosis, after breaking both hips by age 60. My lower back is crumbling too. Latest news from my surgery is that four more prescription items have been removed including, medically approved vitamin and minerals compound. I have no idea how to pay for these items over the counter. So I will have to go without. That is, until I show symptoms of malnourishment, when I can get them re prescribed! All this is happening, while I have been under the continuing care of the Dietitian and Nutritionalist at my local NHS hospital. The reason I got them prescribed was that I was collapsing due to lack of food. To contract Covid and die would be the least of my problems. Staying alive is much harder to do.

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