Use Your Platform Wisely

Accumulatively, a few tweets and TV show segments have turned this week, in my life as an M.E/C.F.S and Long Covid patient and M.E/C.F.S advocate, into an emotional rollercoaster ride. This post addresses two of these instances.

Every single stigmatising comment anyone has ever made about Myalgic Encephalomyelitis has now been polished off and reused with Long Covid. The difference is the sheer volume of people who are becoming chronically sick within a relatively short period of time so the misinformation and vitriol is ramped up.

Let’s start with TV.

Good Morning Britain is a British breakfast TV show that has big ratings, ‘Joe Public’ watches this show and it’s where many get their information and news from before they head off on the school run or to work. It is what I watch when I am half-asleep and not in the mood for hard-hitting political news first thing in the morning. I usually get frustrated at the lack of in-depth analysis rather than misinformation. Yesterday, it was misinformation overload.

Here is the clip –

I know all about the desperation to have your illness mentioned in the press and on tv but when this level of misinformation happens it does more harm than good.

There is so much wrong with what Dr. Hilary Jones said about Long Covid where do I start?!

‘Thinking positively’ does not make the physical symptoms go away. Makes me wonder if Dr. Hilary is one of the many GPs telling Long Covid patients it is ‘just anxiety’. Dr. Hilary encourages activity – despite NICE advising against Graded Exercise Therapy for Post-Covid patients as there is the possibility that it will cause further deterioration. Increasing activity levels every day IS Graded Exercise Therapy. As a Long Covid patient myself, I know that while you are doing the activity you do not feel like you are over-doing it. Once you stop…. that’s when it hits. So ‘within capabilities’ is meaningless.

Dr. Hilary also says that there is ‘plenty of support available’, really? As a Long Covid patient of 23 weeks, I have not experienced this support. My GP surgery took a few months to acknowledge that this was Long Covid (due to not being tested I had no ‘proof’) and are being supportive now but admit their knowledge and available support is extremely limited. Anecdotally, I know that Long Covid patients are starting to be referred to their local M.E/C.F.S support service (if one exists in their area) because no specific Long Covid support exists, M.E/C.F.S ‘support’ is the best fit. Long Covid patients also have an app, this app offers Cognitive Behavioural Therapy and advice on managing symptoms and sleep. This is part of what the M.E/C.F.S support services offer but without the human contact. Again anecdotally, I know that some NHS Trusts are creating new telephone triage roles to deal with Long Covid patients. How much support can realistically be given over the phone? In my view, these are completely pointless and a waste of funds but it would mean they can tick the box in terms of meeting support targets. Not overly helpful for the patient but the NHS can show they have ‘offered support’.

In this segment, Dr. Hilary talks about ‘mild’ Long Covid as if it is insignificant because patients were not hospitalised. ‘Mild’ Long Covid is a significant illness, it can involve strokes, heart issues, numbness, brain fog, visual disturbances, extreme exhaustion’ as with M.E/C.F.S the list of symptoms is a long one. Is it any wonder many members of the general public think it is no worse than flu?!

In my role as Managing Director of Stripy Lightbulb CIC, I have submitted a formal complaint to both Good Morning Britain and Ofcom, I have asked for an apology and for a more accurate segment on Long Covid in future. It is anticipated that a number of Long Covid patients will go on to develop M.E/C.F.S or an M.E/C.F.S-like illness, and so we have been working hard, as an online training company about M.E/C.F.S, to make sure accurate and up-to-date information was in the public domain. New patients are joining this Long Covid community every day and so the need for accurate information is an ongoing one.

Now we move on to Twitter.

I saw this twitter thread this morning, it is a response to this article which has been widely praised by the Long Covid and chronic illness community. It is the Twitter account of Alex Berenson, his bio states –‘ Former NYT reporter and author of Tell Your Children. Pulitzer Prize loser.‘. He has 188k followers, some of the responses to his Twitter thread are mindboggling, like him many are Long Covid deniers. Given that he is a former New York Times reporter his lack of research is astounding.

‘So let’s be clear: long-haul #Covid is a joke. This article is a joke. #sarscov2 is a respiratory virus that can cause cardiovascular problems in vulnerable people; there is zero evidence it causes this miasma of neurologic symptoms and fatigue. Especially since most of the “patients” NEVER HAD A POSITIVE ANTIBODY TEST. Long-haul #Covid is a joke, yes, but the punchline falls on the self-proclaimed victims, who are largely driven by depression, anxiety, and a desire to be part of the illness of the moment. And who are being discouraged from getting the psychological and psychiatric help (often simple and inexpensive) they need and being shunted into the kingdom of the sick, where their handlers will offer an endless array of expensive and useless procedures…

The symptoms are real. The pain of the sufferers is real. Unfortunately the illness is not.’

Where to start?! As a patient with both Long Covid and M.E/C.F.S I found this Twitter thread upsetting. How can someone possibly be so wrong? My Stripy Lightbulb Directors say to me ‘it’s just Twitter, ignore it’, and to some extent I do but to me, this tweet mirrors every single time I have faced stigma in terms of my health for the past 13 years.

Dr. Hilary’s comments about depression and anxiety feed into the roots of this tweet. Therefore, the media need to be careful about spouting misinformation. Neither M.E/C.F.S nor Long Covid are psychosomatic illnesses and yet that is what is believed by those who do not have the illness themselves. Some M.E patients have historically been sectioned, even in 2020, and treated with extensive psychological treatments. Guess what? These interventions did nothing to ‘cure’ their illness. I am really hoping that institutionalisation is not in store for some Long Covid patients who are already being tarred with the same brush as M.E/C.F.S patients.

Medical professionals and the general public need to change their thinking. Instead of ‘there’s no evidence of physical disease so it must be psychological’ they need to be thinking ‘why has more research not been done?’. Whilst it is too soon to have published research on Long Covid, it is not for M.E/C.F.S. M.E/C.F.S has been neglected for decades. If M.E and up to 30 million M.E/C.F.S patients had not been ignored by Governments for so long maybe the research would have been done, and Long Covid patients would be in a better position than they are currently finding themselves in.

The ONLY reason M.E/C.F.S is still considered psychosomatic by many medical professionals is the obscene lack of Government research funding WORLDWIDE. How can we prove it is a physical disease if we are not given funds for research? That said, physical anomalies have been found to prove that M.E/C.F.S is a physical disease so at least some progress has been made. It should be noted that most research funding was raised from within the M.E/C.F.S community. Patients have had to help themselves because Governments refuse to. Perhaps there is too much money to be made in doling out antidepressants like sweets?