M.E. Awareness Week, Part IV: The PACE trial – a ‘Medical Scandal’

Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.). In part IV of this week’s 6-part series, Sally looks at the treatments – or lack of them – resulting from the controversial PACE trials, and the role of ‘bad science’ embedded within.

In yesterday’s article, I explained that people living with M.E  often go through a long period of tests before getting a diagnosis of M.E. Many assume that getting the diagnosis is the end goal. However, once the elation of finally knowing what the heck is wrong with you fades away, the realisation that there is no effective treatment hits.

Many M.E sufferers are referred by GPs for Cognitive Behavioural Therapy (CBT). This doesn’t treat the M.E but can help sufferers deal with the emotional trauma of having a severely debilitating illness. M.E is a physical illness and so psychological therapy doesn’t help relieve symptoms. However, CBT can help many sufferers to understand how pacing ourselves in terms of activity and resting regularly can help to make our lives slightly easier. CBT can give us the tools to manage our condition better.

It would be remiss of me not to mention a research study called the PACE trial and the ripple effect it has had on the global M.E community. It is a complex issue  but I will highlight the key points here.

The PACE trial was partly funded by the Department of Work and Pensions (DWP) and health insurance companies. It aimed to research if and how increasing activity levels over a period of time could improve or cure M.E symptoms.

Given that M.E is essentially an intolerance to exertion, it was hard for many of us to see how increasing activity would help to improve symptoms. £5 million was spent on the trial, but when the results were published, many researchers, scientists, and M.E charities found the research findings were flawed.

As a result, M.E charities, campaigners, and patients have fought hard since 2005 for the study to be discounted. However, the study was accepted by the National Institute for Health and Care Excellence (NICE) and GPs take their guidelines – heavily influenced by PACE – into consideration when offering treatment advice to patients.

After years of campaigning by M.E sufferers and advocates, the PACE trial was discussed in UK Parliament on 20th February 2018, led by Carol Monaghan MP (a former science teacher). Carol pushed for the debate after speaking to ME sufferers and she recognised the need for the arguments against the trial to be heard.

Thousands of people had either participated in the research trial, or had been directed to the Graded Exercise Therapy (GET) utilised in the trial, as a form of treatment. In many instances, participating in GET caused symptoms to severely worsen.

Carol Monaghan worked with the ME Association to hold the debate in Westminster Hall, after she had received nearly one thousand letters and emails from people affected by the condition. She said:

The failure of PACE… could simply be put down to bad science. But unfortunately, I believe there is far more to this. 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.

The debate included accounts from people with M.E. who had struggled to obtain benefits because of treatment guidelines, which wrongly suggest that exercise can lead to recovery. Despite knowing that the research findings were flawed, some insurance companies used the study as a basis to refuse to cover claimants. Many of these claimants subsequently endured deteriorating health because of the treatments and became housebound/bedbound as a direct consequence of the PACE trial.

During the Parliamentary debate,  Carol Monaghan said ‘the impact of the PACE trial on those with ME has been devastating’. She said:

I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.

Carol Monaghan, Parliamentary debate on PACE trial: People With ME

The implications of the PACE trial don’t stop with the UK, either. Other countries adopted the findings of the trial and also recommend GET to M.E patients, so the ripple affect from this ‘bad science’ is being felt worldwide.

Perhaps you have seen reports in the press that M.E sufferers just need to exercise more to get better. That ridiculous and dangerous notion came directly from the PACE trial.

In terms treatment, the symptoms of M.E can be treated on an individual basis, for example drugs are prescribed to address IBS, migraines, insomnia, pain, etc. However, there are no pills or injections to treat M.E itself. Rest is the most effective way to reduce the severity of symptoms. Rest doesn’t necessarily mean sleeping, but ‘recharging’ is often a necessity when symptoms flare and we are unable to function, although it’s not always possible, depending on each person’s circumstances.

The general population is repeatedly told not to use ‘Dr Google’ as a diagnostic tool and to consult a medical professional with your health problems. But when many medical professionals cannot help the M.E sufferers due to a lack of training, knowledge and treatments, ‘Dr Google’ and social media are often our saviours. We use online resources to share information, discuss symptoms and possible natural remedies, or to talk about wider M.E issues.

Finding out how other sufferers have dealt with our issues helps us to help ourselves. For many of us, insider knowledge is the only thing keeping us sane. And while many in the healthcare profession are still unable or unwilling to engage with the reality of living with M.E, we are often the best – and most understanding – experts on hand.

You can get involved in this week’s awareness raising by coming along or helping to spread the word about two exciting events:

Friday 11th May 2018, 12.30 – 2pm, M.E Awareness Week – Go Blue!

Join Sally at the Frank Sorrell Centre for a coffee and a chat, and find out more about ME Foggy Dog and M.E/CFS. This is a family friendly event with activities for the whole family to take part in. ALL WELCOME!

Find out more here.

Saturday 12th May 2018, 12.30 – 2pm, International M.E Awareness Day – Go Blue!

Join Sally for a coffee morning in the Lily & Lime cafe in Central Library. Wear blue to help spread the message!

This is a family friendly event with activities for the whole family. Take part in our M.E quiz to be in with a chance of winning a pack of Quirk, a family fun card game and 2x best seller in the UK, it is nominated for 4 awards in gaming this year and is showcasing at the UK Games Expo in Birmingham and International Spieltage in Essen, Germany 2018. The prize is one of the first 1000 to be printed.

Find out more here.

And of course, read the rest of  Sally’s articles from this week here on S&C.

Head over to the ME Foggy Dog website to follow Foggy’s travels on his blog, donate and shop to raise money for the ME Association, and of course, follow ME Foggy Dog on social media: on Twitter, Facebook, YouTube and Instagram. p>