ME/CFS patients deserve access to new LONG-COVID clinics: advocates
Quebec patients with a disabling and complex illness fear they've been left out of the province's plan for its new LONG-COVID clinics.
On Thursday, the Quebec government announced it will soon open 15 clinics specializing in long COVID and Lyme disease across the province.
Yet the announcement made no mention of myalgic encephalomyelitis (ME/CFS), despite the community having fought for years to have similar clinics established and the illness sharing symptoms with long COVID.
“We were shocked, and extremely upset,” Claudine Prud'homme, of the Association Québécoise de l'encéphalomyélite Myalgique (AQEM), said on Friday. “People have been waiting for these clinics for years. It's the ME community that pushed for them and started the conversation.”
Once known as chronic fatigue syndrome, ME/CFS is a complex illness often triggered by viral infection. It can strike a person's muscular, nervous and immune systems and can often become disabling, with many patients unable to work or confined to bed as a result.
In an open letter addressed to Quebec Health Minister Christian Dubé on Thursday, the AQEM called on the province to ensure ME/CFS patients will have access to the new network of clinics.
The association recalled that, more than 10 years ago, a provincial health institute identified the need for a similar network in Quebec to serve people living with ME/CFS.
The project never materialized, and the estimated 70,000 people with the illness in the province are still without the adapted services and support they need, the letter says.
“What have you done with these recommendations for over a decade?” the letter asks.
“We have been promised several times that this clinic would come, without any concrete results,” it continues. “We thought our patience would finally be rewarded, but we are now once again left disappointed it's not the case.”
The letter also points to how studies have drawn links between long COVID and ME/CFS since the beginning of the pandemic. Given the potential overlap, the AQEM argues, it only makes sense to include ME/CFS patients in the project.
Reached for comment on Friday, a spokesperson for Quebec's Health Ministry said they needed more time to answer questions about whether ME/CFS patients will have access to the clinics.
In Thursday's announcement, the ministry said the clinics will focus on long COVID and Lyme disease because they're both poorly understood and patients in both cases require access to an array of specialists.
The ministry said that as of December, it calculated about 23,000 people would need the services offered under the project.
The network will include clinics across the province and will be co-ordinated by the Centre hospitalier de l'université de Montréal (CHUM).
In an interview Friday, Danielle Fleury, president and associate director of the CHUM, said she understands the ME/CFS community's frustrations and disappointment, “because they have been asking for this for a long time.”
Fleury said when the CHUM first discussed the project with the ministry, ME/CFS was among the chronic illnesses it hoped would be included. But the Health Ministry decided to start by funding the project for Lyme disease and long COVID, she explained.
The CHUM will focus on getting the clinics up and running for now, Fleury added. However, she said it has already made another request with the ministry to include ME/ CFS patients in the project as soon as possible.
“We're waiting for the answer, but we believe it will be positive,” Fleury said. “The will is there and the work is being done to make sure it happens.”