Anyone who follows Stripy Lightbulb on our social media platforms will have seen that we submitted complaints to Good Morning Britain and Ofcom about comments made by Dr. Hilary Jones on 20th August 2020 about Long Covid. To anyone not familiar with the world of chronic illness, and specifically M.E/C.F.S, these comments would have seemed reasonable from a TV doctor. However, we strongly felt that his comments were potentially harmful to Long Covid patients, both current and future.
Watch the clip.
'You need to keep thinking positively. You will get through this.'
Following a report that Covid-19 patients still suffer symptoms months later, @DrHilaryJones shares his advises sufferers to maintain a healthy lifestyle and get psychological support if they need it. pic.twitter.com/QCy9WQIMUg
— Good Morning Britain (@GMB) August 20, 2020
Here is the complaint we submitted on 20th August to Ofcom
We are writing to complain about the Long Covid misinformation broadcast on Good Morning Britain by Dr. Hilary Jones this morning.
As a M.E/C.F.S online training organisation, we have been working hard with and for the Long Covid community to make sure accurate information is available for new patients. Some Long Covid patients are ‘highly likely’ to go on to develop M.E/C.F.S and so we have an interest in this subject.
We were disappointed to hear Dr. Hilary Jones recommend Long Covid patients ‘increase their activity levels’ whilst considering their capabilities. In July 2020, the National Institute of Care and Excellence advised against Graded Exercise Therapy for Long Covid patients https://www.bmj.com/content/
370/bmj.m2912. Increased exercise has the potential to cause patients to significantly deteriorate. How many new Long Covid patients will now follow his advice given that he is a well-respected GP and TV doctor?
What is this ‘support’ that Dr. Hilary Jones mentioned? Anecdotally, we know that patients are being referred to M.E/C.F.S support services because, whether they have M.E/C.F.S or not, it is the ‘best fit’. These already overwhelmed services have long waiting lists. The ‘treatments’ available are CBT and GET. Long Covid patients also have an app. That app includes CBT and sleep advice. We have spoken to thousands of desperate patients who have been turned away by their GP and are having to seek help from other sources. M.E charities are being overwhelmed with pleas for help from Long Covid patients as they are the only organisations who understand what they are going through. Dr Hilary Jones diminished their patient experience by saying lots of support is available, that is simply not true.
Dr. Hilary Jones also suggested patients ‘think positively’, whilst we agree that negativity doesn’t help, we would like to make it clear that thinking positively does nothing to address the severely debilitating physical symptoms Long Covid patients are experiencing. This is why CBT has limitations with M.E/C.F.S, it helps with feelings of guilt and coming to terms with having a chronic illness but is an ineffective ‘treatment’ for physical illnesses. We are hoping that by saying ‘think positively’ Dr. Hilary is not suggesting that Long Covid is ‘just anxiety’ as has been said to many Long Covid patients by their GPs. Not true and unhelpful.
There are far more ‘mildly’ affected Long Covid patients than hospitalised patients. This was not reflected in this piece. ‘Mild’ sounds insignificant and ‘flu-like’, is it any wonder that so many members of the general public believe it to be ‘just flu’? Long Covid is not just ‘not feeling quite right’, the symptoms are significant and life-altering.
We have now checked the Ofcom Broadcast Bulletins webpage to see their decision. There was only one reason for complaint, 3 complaints, listed for 20th August, Ofcom categorised it as ‘complaint assessed but not pursued’. Here is some information on how Ofcom deal with complaints.
Misinformation in the media has plagued the global M.E/C.F.S community for decades, complaints are very rarely upheld, so this Ofcom outcome is not really a surprise. However, Long Covid is such an important topical issue can the media warrant getting it so wrong?
We are not participating in ‘cancel culture’ in terms of Dr. Hilary Jones, we know that he is a well-respected GP and TV doctor, and have no wish to harm his career in any way. We would, however, recommend that he improves his knowledge base regarding the NICE guidelines about Long Covid (issued July 2020) and starts recommending convalescence instead of increased activity to patients floored by this new disease. Little is known about Long Covid but what we do know, by listening to patients, is that most experience a significant relapse after any activity. We would also recommend that he participates in our healthcare professionals e-training course (currently discounted to £12 during the pandemic) to fully understand how post-viral illness can affect patients; Most cases of M.E/C.F.S are triggered by viruses.
Sadly, Dr. Jones was saying on national television what many GPs and medics are saying to patients privately in consulting rooms across the world, he is not the only doctor who holds these beliefs.
We really hope that history is not repeating itself and that Long Covid’s are not destined to be misrepresented across the media in the same way as M.E/C.F.S has been for a very long time. This information increases the stigma experienced by patients on a daily basis. Family members wanting to know why they can not return to work when the TV doctor says they should ‘increase activity’ or sitting in a Dr’s office and being told worrying about being sick is what is making them sick in the first place.
We have not received a reply or seen an outcome for our complaint submitted to Good Morning Britain.